Tall Tales from Kansas

impacted our sense of community and the way we care for each other

This sunset, on the drive home last night, was like a great big, ginormous, hallelujah, signifying the beginning of a few days off after a weekend of work. You know the feeling I am sure. It seemed an appropriate visual preamble. 

Let me take a minute to tell you that our COVID numbers at the medical center continue to come down. As of Monday 2/21/22 at 4pm we had 124 COVID patients in the hospital. Only 37 of them with "active" disease and 87 of them have been deemed "recovered". Let me clarify that this means they are no longer in isolation but they are still too sick to leave the hospital. Only 4 COVID patients are in the ICU and only 2 on ventilators. I hesitate to take a big sigh of relief, but I am doing it anyway.

Let me also say that while the decreased numbers of COVID patients ease the strain on the system, we are all still dealing with many effects of COVID on our work relationships and environment.  We are all less resilient than we once were. The strain of our team not being able to meet in person to really communicate with each other about our work and the way we do it has significantly impacted our sense of community and how we care for each other. This is hard for a person who HATES meetings to admit, but when we are not in person to discuss decisions, it is easier for things to get swept under the rug, and for the power hierarchy to get lopsided. I bet all of you working stiffs like me can relate to this.  

Moving on...

This is my completed LOVE pillow. Which I think I already said I LOVE. Don't you find it gratifying when something you visualize in your mind turns out sort of the way you intended? I do not know what I would do without the ability to distract myself with making stuff. I enjoyed everything about this project - the colors, the piecing, using the free-motion feature to do some wacky quilting, and again making and sewing on binding. I may need to start a binding making/application business. Kidding of course, I only enjoy making things when there is no deadline except the ones I impose on myself which are very loose. 

..."grief is not something to be solved, it is something to be tended..."

The wind is howling outside this evening. This afternoon metal chairs scooted across the back deck, on their own. It's Friday night - pajamas are on. Insert deep sigh of pleasure here. 



Let me start with a one line COVID update from my hospital in Kansas City. As of 4pm yesterday our numbers were as follows:
169 patients hospitalized with COVID, 17 in the ICU, 8 on ventilators. It seems as though we are on the downward trend hoped for last week. Fingers remain crossed. 

This week I have been attending the American Academy of Hospice and Palliative Medicine Annual Assembly - virtually. I had my doubts about how this would go, but every one of the 10 sessions attended so far have provided something I needed. Some things I didn't know I needed. I have heard the stories of brave souls who have struggled mightily through the last years, trying to cope with the demands of work, family, sickness, self doubt, conflict, fear, uncertainty, and instead of burying all that, choosing to share how they have tried to pull through it. Admitting you are broken in front of thousands of your colleagues takes the heart of a lion.

In one session we heard from a resident in Jamaica, a psychologist in Chile, and a member of the Cheyenne River Sioux tribe in North Dakota. They shared experiences of trying to bring palliative care across cultures to enhance resilience during the pandemic. Talk about using technology to bring the world closer for a common good. While listening to them talk about what it means to know they are not alone I want to reach through the screen to touch them. 

There was a wonderful presentation about reflective writing for healthcare workers, it blew me away. The line that will stay with me is "...grief is not something to be solved, it is something to be tended..". On a more clinical side there was a fantastic review of Voluntarily Stopping Eating and Drinking (VSED) as a last resort for people who, in spite of efforts to palliate symptoms, continue to suffer and desire a hastened death. There is much written about Medically Assisted Aid in Dying, but you hear less about VSED.

It is good to be among (even virtually) your people. Adam Hill, who self identified as a human being ahead of his specialty of pediatric palliative care, said it so well as he shared his journey .... "there is a lot of pain and suffering in the world I didn't cause, yet I can stand in the face of it and try to make a small difference".   That's all any of us can do right? 

they also fit in the soothing category

Happy Sunday morning from Kansas. It's cold and sunny here, 32 degrees according to my weather app. If you have not had the pleasure of a "London Fog" let me nudge you towards this warm, comforting, beverage. Earl Gray tea (my favorite is Earl Gray Creme from Art of Tea, but there are many wonderful tea companies out there these days), steamed milk, and honey or vanilla syrup. My proportions are a cup of strong hot tea, 1/2 cup of milk frothed (I have an aero latte whisk thing), and a generous spoon of honey. You need a big cup. This is something your dearest friend would make you if you went to visit and needed soothing. Two of the women I work with turned me on to it a few weeks ago, I was hooked from the first sip. 

At work our COVID numbers are moving downwards. As of 4pm on Friday we had 181 inpatients, 26 in the ICU, 14 on ventilators. I hope this is a trend. 

This is my latest bedside read. Just finished it this weekend. Fresh Waters for Flowers by Valerie Perrin is a novel about Violette Toussaint. She has stumbled into the job of caretaker at a cemetery in Bourgogne, France.  She has been through difficult things and we follow along with her as she moves through life. I don't want to spoil this for you so that is all I will say. BUT - I do think it's interesting that in the last 10 -15 years I have read several wonderful books where cemeteries loom large. In the event that you have not read them, and are a lover of a stroll through a cemetery as I am, let me give you a list. But do put Fresh Water for Flowers on the top.  It's a winner.

A Gracious Plenty, by Sheri Reynolds
Lincoln in the Bardo, by George Saunders
Her Fearful Symmetry, by Audrey Niffenegger
The Whole Town's Talking, by Fannie Flagg

Marti Huff described The Whole Town's Talking as "heartwarming" and I agree 100%. A Gracious Plenty I would also put in that category, the other two are more unusual stories and you should look them up to be sure you want to read them first - I enjoyed them all immensely. 

While we are talking about comforting, heartwarming, and hopeful trends, let me show you my grocery store flowers from the week. They also fit in the soothing category.

we are stretched thin

Today I am going to share a bit about what is happening right now at my hospital in Kansas City. It's a grim picture, but there also remain moments of incredible sweetness. Because that's how life is, and for that I am grateful.  

As of 7am on Friday January 7th we had 139 COVID patients in the hospital. Of those 139, 131 were unvaccinated. Twenty two of them are in the intensive care unit - 20 have not been vaccinated. Twelve of those in the ICU are on ventilators - 11 unvaccinated. That's the numbers. We have once again begun to limit visitors in the hospital for all patients. Obviously the COVID patients can not have visitors, but we must decrease the numbers of people in the facility to decrease exposure overall as well. 

At the beginning of this week, 508 employees and physicians who had tested positive for COVID 19 were off work. In addition 232 employees and physicians were off work waiting for test results. 

Of the more than 100 requests the hospital gets daily to transfer patients to us for care, we can only accept 10-15% of them because of capacity constraints. We are also once again (based on medical necessity) deferring approximately 50% of scheduled surgeries for patients who will need to be hospitalized after their procedures. 

Licensed clinical staff who work in non-clinical roles have been transitioned to bedside care duties as able. 

The bottom line? We are stretched thin. With all of this going on, you can imagine my reaction when I read on my neighborhood "NextDoor" group the comment by the man who said that COVID-19 is fake and all the signs on the stores downtown on Massachusetts street about masks being required is a lot of hype or something to that nature. I deleted it immediately with no response. That level of complete ignorance will not be impacted by a comment from me. 

These are my experiences in my hospital. The hospitals in your communities are likely in similar situations. We are hunkering down and putting one foot in front of the other. Some days are harder than others. Where, you may ask, in all of that are the moments of sweetness? Well it was that apple cranberry pie with a lard based crust (baked to perfection) that Emily Hansen brought in, it was when Emily Barnett-Doyle addressed Shauna Gibbons with a "hey girl, hey" in her highest pitched hip-girl voice that made me laugh so hard I thought I would cry, it was the woman who brought to the bedside the dog of her neighbor who has been hospitalized - just in time before he died, it's listening to a wife tell me about her husband who is critically ill... and all of the times he has rescued someone who needed help. These are the things that get me through the days, and of course knowing that Chris is keeping the home fires burning, with the garage door open as I come up the driveway, fixing dinner, taking care of the leak in the basement, not asking me too many questions. 

Stay safe out there friends, keep that mask up, avoid crowds, if you feel sick stay at home and get tested, wash your hands a lot, and of course get those vaccines and boosters.

Santa, if you are listening, a light at the end of the tunnel please...

A jumbled bag of thoughts is what I bring for Christmas Eve.  I just reach in and pull them out. You take or leave as you see fit.  Options may include, and may or may not be limited to fruitcake, covid, and serious crafting.

Lets start with the fruitcake because the picture is pretty. I have unexpectedly turned into a fan of fruitcake this year.  Maybe when you reach the age where your palate is more refined it happens naturally? This one from Drakes has been a treat and will be added to the annual list of things I must do for it to really be Christmas. Angie, I am eating a piece for you because I know you would want me to. What's that? You want me to eat 2 pieces? Will do. 

No photos for the next topic, just a report that here in Kansas City our Covid numbers continue to rise. Yesterday we were up to 83 hospitalized patients. This wave is of the unvaccinated. Of these 83, 80 have not been vaccinated. Of the 19 in the ICU 18 are unvaccinated. Of the 14 on ventilators 13 are unvaccinated. As I said in an earlier post, I am done telling people to get the shot.  That doesn't work. The evidence is clear to me, but each must judge for themself.  I continue to be amazed that family members are so shocked by the severity of illness and how quickly one can deteriorate and die. It is very hard for someone who see's this to understand how it's possible so many people do not know the complete devastation that COVID can be when it is severe. Families question if we are doing all we can. What about X and what about Y? Are you using that? Can they be transferred somewhere else where they might have more to offer?  I avoid asking why their loved one was not vaccinated. It's not helpful when someone is grieving. Listening is best. Santa, if you are listening, a light at the end of the tunnel please. Can you get the elves working on that? 

Chris and I will be spending the holiday alone. I am not comfortable being around young children who  can't get vaccinated and anyone at high risk for serious illness. They need to be shielded from this virus in every way possible. We will take a walk outside with vaccinated and boosted family members.  We will sing a few off-key carols. It will be perfect. Pajamas will be the dress code when we get home. 

In the crafting arena we are cruising on high speed around here! I got the idea that we should make snowflakes after seeing them hanging up in a coffee shop and at the library. Oh boy, they are fun to make, harder than you might think initially, but so entertaining. Let me mention that it is helpful if your partner was an art major in college, has an eye for detail, and can still recall from the 3rd grade how to make a German Christmas bell. 

I like them outside looking in as much as inside looking out. Plus, the shadows they make on the curtains are super cool. 

The pygmy forest has been set up and the wee jolly elves are frolicking in the trees.

 
I feel the need to make one more mitten to add to the garland before midnight tonight. 

I may or may not make it.  It’s fun to try though. 

In case you get the urge to fold and cut and tape, this video tutorial on making snowflakes was what we used: Papercraft snowflake tutorial

I hope you will read yourself a fairy tale right before you drift off to sleep tonight. Something magical and sweet. 

to help us all get through this as safely as we can

This blog post has been rolling around in my head for a few weeks. The competing desire to share the bedside experience of what is happening with this latest surge of COVID, fueled by the Delta variant, keeps running up against the desire NOT to have anyone think or comment that what I am doing is anything more than it is. Which is doing a job that I love, am well compensated for, and wouldn't trade for something different. 

The need to describe what I am seeing has won out, obviously. This morning our number of hospitalized COVID patients was up around 85. We are back at that place of walking through the ICU with room after room of someone seriously ill, on a ventilator, no family here, with no end in sight. Back to the discussions of "would they want a tracheostomy" to allow more time to try and recover, even though they will not regain the quality of life they once had. We are also seeing much younger patients this time around. The mother whose baby was delivered early, the one she hasn't held or seen because she is on a vent, on ECMO. The young man who may yet need a lung transplant - which certainly does not mean a new lease on life as the median survival is somewhere around 8 years after transplant these days. Most of these patients had not been vaccinated, but not all. Some fully vaccinated individuals for a variety of reasons (other co-morbid conditions such as cancer for example) who did not develop the immunity expected from the vaccine, have been critically ill and died as well.  

At the end of last week I rotated off the COVID team for awhile. A needed change. I vacillate between wanting to punch people who have not gotten a vaccine (for whatever reason), to being sick and tired of hearing people say "get the damn shot". The vitriolic comments on a recent "Next Door" post made me sick - on both sides of the argument. I am so sad for families who can not be present for their loved one. I don't have it in me to do a half-ass job caring for unvaccinated patients with COVID who are dying, anymore than I would do less than my best for  an un-helmeted head trauma patient, someone with end stage liver disease, or heart failure who may not be in the place they are now if they had made different life-style choices.  

Where this will end I can't say. What I do know is that there are times when I am less less patient than I could be, less tolerant of others, and have been misunderstood because of a comment made before fully thinking it through. All of these thoughts circulate in a loop in my head while I wrestle with the importance of speaking up to protect our most vulnerable populations. Thank you to everyone doing your part, the best way you know how, to help us all get through this as safely, and intact, as we can.

Finally, I am incredibly grateful for nature. The morning walks, the evening sunsets, the reminders that our world is full of beauty. Still. 

there is vaccine out there and available for people who have not yet been vaccinated

Above image from the New York times and if you go to their site you can hover over an individual county to see the number of new cases per day.  

Thursday morning I listened to the update from our hospital leaders who have kept us well informed about the state of COVID from a local perspective throughout the pandemic. Admittedly, I have stopped tuning in to these regular meetings as our numbers were declining. Today though, with the concerning trends we are seeing in Kansas and Missouri, I listened in. Here is what I learned.

Call this what you want, it feels like a 3rd wave may be hitting. At the beginning of June we were down to one COVID unit and 4-5 patients with active infection. Today we are back up to several COVID units, 44 inpatients with COVID and 37 of those with active infection.  All this is coming primarily from the Springfield Missouri area - someone described it as a "drop of ink that hits a bowl of water and spreads out from there".  I think that is a great visual to help understand what is happening. From Missouri it is spreading into Arkansas and Kansas. Hospitals in Springfield are overwhelmed and they are trying to set up alternate care sites in the area. Our hope in the Kansas City area is that our higher percentages of vaccinated individuals will help us get through this without returning to the way things were with the first 2 waves last year. 

In Kansas we are hearing that 90% of the new cases are the Delta variant and in Missouri it is 95% of new cases. The Delta variant is more transmissible but not necessarily more deadly. It is hitting unvaccinated populations in this time when people have been returning to "normal" life, with mask mandates being lifted in most communities. More younger people are getting sick - those in their 20's and 30's and even some individuals who have been fully vaccinated have been affected. They primarily fall into the category of people with substantial co-morbid conditions who may have had a suboptimal response to the vaccine because of that. Individuals with chronic serious illness can very easily get critically sick with any kind of additional infection, including COVID-19. These people should continue to wear masks when around groups of people both indoors and outside, as well as being cautious about who they are hanging out with. At work, we all continue to mask while inside the hospital, as well as wearing eye protection. 

There are no firm answers yet on whether boosters or 3rd doses of the vaccine will be recommended. What we do know for sure, is there is vaccine out there and available for people who have not yet been vaccinated, and they are strongly encouraged to roll up their sleeves.  

This is my perspective on what is happening in the Kansas City area, based on reliable updates from our hospital leadership. I do not claim to be an expert, I just thought it would be helpful to share what I am hearing. 

death is mysterious

Can you take 2 posts in a row about palliative care? How about if this one is a tender love story? Not related to COVID. About an 87 year old who wanted to "pull the plug" over the holiday weekend because he was "done". And even though he was really sick, didn't appear to be dying in the next days to weeks. Except, what do we mere mortals know about predicting end of life?

When I sat with he and his 3 daughters and sister on Sunday and we talked about how things were going, I asked him if he knew he didn't "have a plug to pull". He said he did not. As bad as he was feeling, he surely thought he must be on some form of life support that could be stopped that would give him a quick exit strategy.  What we could do I told him, was put a safety net in place, by making sure he had a Do Not Resuscitate order in the event he were to decline suddenly - which he enthusiastically endorsed. When asked if his bags were packed and he was ready to go anytime he was called from this life, he said "you got that right".  

As we talked further about worries, he said he was anxious about "my death". This admission opened the door to good conversation about what to expect. Most people don't know what dying is going to be like and don't ask... maybe because they are afraid, maybe because they think it will be horrible and they don't want to know? Walking people through the process and providing reassurances that we will be there to manage symptoms and minimize suffering can provide great comfort. This is where the love story part comes in... when this part of our talk concluded he looked at me, winked, and said "I love you". 

On Monday he decided he was ok with continuing some therapies, allowing more time to see if his body could recover. However, on Tuesday, he was short of breath, feeling badly, and wanted to be done. This time there was no "ifs, ands, or buts" about it. We quickly transitioned to a more comfort focused plan of care, and made medications available for his shortness of breath. Within an hour his nurse called to say he was declining rapidly. When we went back to see him, he had indeed changed dramatically. I expected he would die Tuesday night, but on Wednesday morning he was still there, looking very peaceful, breathing regularly, not really awake but intermittently would open his eyes. On my last visit Wednesday, late in the day, he opened his eyes and smiled at me, with what seemed like total recognition. 

He died in the early morning hours today, Thursday. In 3 days he went from not having a plug to pull, to declining precipitously, to becoming stable, to finally dying comfortably surrounded by his family. What is to be learned from this? That death is mysterious. That sometimes people have a wisdom about their bodies and know something is going to happen before it does. That he loved his family very much and helped them prepare for his death in the way he knew best? I have only theories, no answers. The only thing I do know for sure is that THIS is why I work in palliative care. 

P.S. That bougainvillea photo at the top has nothing to do with this post, except for the fact that I like it. 

people are still getting sick and dying

Just in time for the 4th of July, the numbers of individuals with COVID is on the rise in our part of the country. In particular, in the Springfield Missouri area, the hospitals are having to divert patients because of the numbers of people hospitalized with COVID. All of this is being attributed to low vaccination rates and the Delta variant. A majority of those affected are under 30 years of age. 

This week I took care of a young person in their early 20's. Previously very healthy. He is on a ventilator with lungs so badly damaged by COVID that he is also on ECMO - tubes the size of garden hoses taking the blood out of his body, re-oxygenating it, and returning it to his body, all with the hope that his body will recover to the point where he is able to once again exchange oxygen normally in his lungs. The hard fact is that 40-50% of people who go on ECMO recover. That means the other 50-60% die. I don't know which category he will ultimately end up in. What I do know is his parents were heartbroken at the site of their son, seen on an iPad screen, so critically ill, unable to communicate with them at all, tubes coming out of every part of his body. The hope that the days of doing those visits  for families were over, was premature. 

All of this is to say that if you are NOT vaccinated, you should still be operating as you did at the height of the pandemic. Wearing a mask indoors as well as outdoors when you are in a crowd, maintaining social distancing, washing your hands all the time, cleaning and disinfecting surfaces. 

What do you do about family members who are not vaccinated? Tell them it's not too late to get a vaccine. This is hard stuff and we are not out of the woods yet. My intent is not to threaten, bully, or scare people into getting vaccines, just to talk about what I am seeing - which is that people are still getting sick and dying. 

and bring him to life again with the telling

If you are not a fan of magnolia's, stop right here and come back tomorrow. Because all there is tonight are images of a grouping of star magnolia trees between 8th and 9th on Tennessee street in Lawrence Kansas.  After discovering them about 5 or 6 years ago, I try to photograph them every year in bloom. Some years the sky is brilliant blue, some years it is overcast, like this year. 

But always they are beautiful, no matter the weather conditions. Last year when they bloomed I was just beginning my long stretch of time on the COVID team.  What to say about this year? The cycle of life continues. I have been in touch several times recently with the wonderful mother of a patient who died of COVID last June. She tells me her family has been "broken" by his death. I want to wrap her in my arms and bring her to sit under the magnolia trees with me, and have her tell me stories about her son, and bring him to life again with the telling. 

I have no answer

This is another COVID story. It's a hard one. Don't read it if you can't take another single bit of sadness right now. The thing is, these losses matter. Whenever I hear or read about someone thinking the number of deaths related to COVID are inflated, or the virus "isn't real", I am compelled to share what IS happening. 

At the end of January, I told you about a young brother and sister in our hospital. Twenty six and twenty nine. At that time one was on a ventilator and the other soon to be. Their mother dead as well from COVID, though these 2 children didn't yet know it.

These siblings have had all the complications we are seeing with COVID patients. In addition to the devastating lung injuries, they have had gastrointestinal bleeding, kidney issues, and blood clots.  They have both received every therapy for COVID we have to offer. Despite all of this, one died last week. 

While they have been hospitalized my mind has wondered if it was possible that these 2 souls could be communicating with each other. Siblings, dying, several rooms apart, no family here in person. I know it's the stuff that movies are made of, but I want to believe somehow that there IS a connection. That they are supporting each other, that their mom is whispering words of comfort to them from wherever she is.

Meanwhile, the sibling who remained in ICU, on the ventilator, continued to have oxygen saturation levels dipping into the 20's and 30's. Sometimes with coughing, sometimes for no apparent reason, this means the nurses race into the room, disconnect the ventilator, "bag" her until the sats climb back into an acceptable range, then back on the ventilator until the next episode. Her body keeps trying to die. Her family holds on to hope. Her lungs so damaged from the virus. 

Then one morning this week, I pull up the list of patients on my service, and see she died overnight. The one grace in all of it, is that 6 members of her family were able to come and see her before they removed her from life support. 

The prolonged suffering of this family as they held on for all they were worth was so painful. Would it have been better if the mom and her two children had all died at once? Which suffering would be "easier" to bear? It is not a lie to tell you that I let out a long sigh when I saw she had died. Is it my suffering I wanted to end? Was it my desire to see the suffering of the family stop? There comes a point when you know someone is just not going to make it. You gently tell family you are "worried" they will not get better. They ask "isn't there any other medicine you can use?" 

Since 1981 I have been taking care of people who are dying, comforting families, managing symptoms, this is unlike any previous experience. How can one make meaning out of this? What is the lesson, the legacy? I have no answer.

P.S. this post is not meant to reflect on me in any way, please don't comment about the work I am doing. this is about the people who are sick and dying. if you want to comment, please add your "story" about the losses you have seen/experienced.

P.P.S. thank you.

I saw the poster below hanging up in the hospital a week or so ago. I couldn't resist posting it. I love a clever sign maker.

 

a frivolous distraction that occupies the mind and raises the spirits

Before embarking on tonight's post, let me thank each of you who left a comment on yesterday's post. I want you to know that those of us doing this work feel the immense gratitude from our patients and their families. Every single day. It is all the thanks we require. Sometimes I consider not sharing these stories. Mostly I don't want you to think I am doing anything more than being a good nurse. On the other hand, its important for people to know what it's like on the front lines.  I don't know about you, but when I read all the stuff in the paper and online it's hard to absorb it. What I CAN understand is the individual stories that illustrate the very difficult and unusual time we are living through. And, I do want you to know what that is like.

Now lets move on tonights business... a great coping mechanism.

Valentines Day decorating, much like Christmas decorating, is a frivolous distraction that occupies the mind and raises the spirits. 

Do I need to make a Valentine colored dishcloth? I certainly seem to think so. The nice thing is I am using the pattern given to me by Louise Berndt, who sent me down the path of dishcloth making when she made some for me several years ago. I like to think of her living on in my house, from way out there in western Kansas. 

Actually, as I look around at all the "heart" stuff in my house right now, I see great memories of other women. From the quilter in Germany, to Mary in Santa Barbara, to Pam's hearts and flowers from art retreat, to the hearts I used to get at the gift/coffee shop at unity village when the knitting retreat was held there and we would sit  around drinking chai latte's, knitting, and laughing. Always laughing. 

Here's to pink, red, hearts, flowers, yarn, and lots of talented women. 

to give a face to the individual experiences that can get lost in the wave of this pandemic

Last week I dived back into the COVID world at work. We currently have around 120 hospitalized patients who are COVID + or recovering but still too sick to get out of the hospital. We think it's possible that our numbers have peaked and admissions will continue to decline. It's all a guessing game. 

Here is what I am seeing:

There continue to be people dying in the ICU with limited access to family. I held the iPad up to show a husband and son their mom who was taking her last breaths this week. How is it that this has become "routine"? I assure you it is never routine for us as we work to convey the tender loving care provided by the hospital chaplain, the nurses, the respiratory therapist, all converging to be the "family" for those who can not be present.  

We were asked to get involved in the care of siblings in their 20's, both critically ill, one on a ventilator, one likely headed in that direction. Neither of them with other serious medical conditions. Their COVID + father died in his sleep this week at home, he hadn't had serious symptoms, they don't know about his death yet. Their sister tells me she prays they will get better so they can attend his funeral next month. 

On a FaceTime call a wife tells her husband that his Aunt is praying for him "using your FULL name so God will know exactly who she is referring to in her prayers", another friend of his wants him to know she is making him both a lemon meringue pie and a lemon icebox cake... hoping this will entice him to recover. So much love coming from this wife as she passes on these messages, then asks me to please take a photo of him and text it to her.

These are the everyday moments no one knows about unless they have been there themselves. I pass them on to give a face to the individual experiences that can get lost in the wave of this pandemic. 

a christmas miracle

This week at "my" hospital in Kansas City, I had the pleasure of taking care of a very nice man from a really tiny town in the middle of nowhere, a little ways south of Amarillo Texas. He came to us because no place any closer to home could meet his needs, and we happened to have an ICU bed. 

We patched him up, and he recovered the best he could. Which meant he was stable and didn't need our high level of care anymore, but as is often the case in these situations was stuck here, 15+ hours from family, and unable to get home in a private vehicle. In addition to COVID and other complex medical issues, he also has dementia. Which means he had a very hard time understanding what was going on. 

We puzzled over this, made lots of phone calls, scratched our heads, dug deep, and finally one of our BRILLIANT social workers (Cathleen) came up with a plan. She figured out a way to get him an air ambulance home, using a grant their town had received for taking care of patients "displaced by the pandemic". When I went in to tell him he was going home yesterday, he started to cry. He told me he didn't think he would ever get to see "them" again. In addition to his wife, daughter and son, he was badly missing "coco" the dog. 

Getting patients to a lesser level of care (ie back home) from a higher level of care (our hospital) is one of those incredibly difficult things that is often cost prohibitive for families, and it is not covered by insurance. When this all worked out in a way that I still can't believe, I told him it was a Christmas Miracle and he agreed it must be so.

As we learn new things from taking care of patients during this pandemic I hope this problem is one that can be solved for more people in the future, because isn't it as important to return someone to their family as it is to send them far away to try and fix them? 

crisis standards of care

If you live in the Kansas City area, you may have seen this in the newspaper. It represents a cooperative effort from health care providers across the city, requesting help from our community, so we can continue to care for them.

While we work on this, we are also talking about "Crisis Standards of Care". When a crisis goes into effect as mandated by state leadership, we must be prepared to make hard decisions. For example, who will benefit most from limited resources in order to save the most lives possible. What tools/scores/algorithms will help determine this in a responsible/ethical manner? If there was ever a committee I would not want to be on, it would be that one. Palliative care teams will be charged with helping care for those seriously ill patients who are not selected to receive therapies that might save their lives. Maximizing comfort is something we know about. The lack of a choice to focus on comfort, is something we are NOT familiar with. 

I am trying to put myself in the place of having a conversation with the daughter whose mother is dying and has been told that she will not have access to the most aggressive ICU care possible. Can you even imagine... the grief, anger, pain, frustration, rage, that daughter will be feeling? At the same time I am still telling myself that it is not possible, that things will not get that bad. 

I am not allowing myself to go to that place yet. At the same time, I am grateful that our leadership is trying to prepare for it so we are "ready". As if we ever could be.

my motto for every aspect of life in the coming year

I realize that it has been a solid few months since I wrote anything about COVID-19. Frankly, after dealing with it all day long, I am weary. Tired of witnessing the anger, disbelief, grief of families. Worn down by the stress I see in my team mates. Fatigued by the inability of people to take the virus seriously. Devastated by the staggering number of deaths. Realizing that no matter how hard I try, my ability to make a difference is small.

Many of you are likely feeling the same. No matter how I twist and turn and walk and write and bake and knit, I can't escape this vortex of badness. In Kansas City our numbers of hospitalized patients are higher than they have been at any point thus far in the pandemic. At my hospital we have outgrown 1 full ICU of COVID patients and have expanded into an additional ICU.  We are at risk of running out of hospital beds in the Kansas City area.

The only positive thing to report is that patients who get sick with COVID and are hospitalized, are not staying in the hospital as long as they were at the beginning of the pandemic. They also have a lower chance of dying from the disease now, than they did back in March. We have learned from ongoing studies, which medications and interventions are providing the best outcomes. Some scientists have also speculated that the amount of virus during an exposure may have been lessened by mask wearing, leading to milder cases of the disease. 

My purpose in putting this out there today is to inform and thereby help keep our community safe. It is hard to get my mind around the entire Kansas City area only having around 100 available hospital beds and 20 ICU beds - right now. This has limited our ability to accept patients in transfer from outlying community hospitals, it may well lead us back to a place of stopping elective surgeries. 

I am hopeful the transition in leadership in our country will help present a united message about how we should be conducting ourselves in a pandemic. 

I purchased a copy of the print below from Lynn Giunta (CollageGirlKC) on Etsy this month. I think her work is amazing, and I love that she is from Kansas City.

It is my motto for every aspect of life in the coming year.

Helpful links: CollageGirlKC Etsy shop.

we are experiencing a prolonged fluctuating plateau

Today I thought I would take a minute to share a snapshot of the COVID-19 situation in my area.  To start, I am now off the COVID positive palliative care team. I recognized the need for a break from this very difficult work and the 6 advanced practice nurses on our team are all taking turns rotating through it. This makes sense for lots of reasons. 

Lets start with the numbers:
In the hospital this morning we had 25 COVID positive patients hospitalized and in isolation.  We also had 27 patients who are considered to be recovered (no longer in isolation) but still sick enough to be in the hospital. More about that in a minute. 

In Kansas we are experiencing a prolonged fluctuating plateau but have moved from low to high numbers. It is anticipated that we will have a slower, more prolonged downward trend, and may have more “peaks” in the future.  As of today, in the state of Kansas we have had 40,968 cases and 446 deaths. In Douglas county, where I live, we are seeing an influx of college students and a BIG increase in numbers related to this. Specifically among the fraternity/sorority population where there is a 10% positive rate and quarantining is supposed to be going on in an effort to decrease these numbers.  

At the hospital were I work, we are seeing more new admissions per day than we have previously seen at any point in this pandemic. We are not “overwhelmed” but it would be appropriate to say the system is “stressed”.

Above I mentioned patients who are considered to be “recovered”. Let me take a second to explain what that means.  In the hospital a patient can come out of isolation if the following criteria are met:

1. COVID + patients who have confirmatory lab results who have gone 24 hours without a fever of 100.5 or higher (without use of fever reducing meds), AND improvement in respiratory symptoms (cough, shortness of breath), AND it has been 10 days since the first diagnostic test.
2. Patient with high suspicion of having COVID 19 without confirmatory lab test who have gone 24 hours without a fever of 100.5 or higher (without use of fever reducing meds), AND improvement in respiratory symptoms (cough, shortness of breath), AND it has been 10 days since the first symptom appeared. 
3. For the ICU level patient with severe to critical illness at least 20 days have passed since first diagnostic test, AND at least 24 hours without a fever of 100.5 or greater (without use of fever reducing meds), AND improvement in respiratory symptoms (cough, shortness of breath).  

The above is based on available data that persons with mild to moderate COVID 19 remain infectious no longer than 10 days after onset of symptoms, and those persons with severe illness likely remain infectious no longer than 20 days after onset of symptoms.  Recovered people can continue to shed detectable virus in upper respiratory specimens for up to 3 months after onset of illness but in lower concentrations and infectiousness is unlikely.  Because of this we are relying on symptom-based rather than test-based strategies to determine who can come out of isolation. This is really important for families because once a patient is out of isolation, they can have one visitor per day. The importance of this can not be overstated. 

I will share more about a vaccine in my next COVID-19 post. For today, I have already exceeded my usual word limit. But not before I remind you all one more time of the vitally important trifecta of continuing to mask, maintain social distancing, and wash those hands.  In general, masks are not needed outside, unless there are 15 other people milling around looking at the same glorious view you are. If that's the case, mask up. 

You may already know this, but if you don't, let me share a few thoughts on masks - cloth masks should have 2 layers of washable, breathable fabric. Masks should completely cover the nose and mouth and fit snugly against the side of your face. Gators are not considered to be effective (I am seeing lots of these around). Masks with vents are not effective. Masks should be removed using ear loops, wash your hands after removing a mask and before you touch your face. Wash masks regularly and iron them after they dry. 

These are my perspectives on what is happening in my area, as a palliative care nurse, not an infectious disease specialist.  I believe they are applicable everywhere. Take what you need, leave the rest for later.

P.S.  Happy Friday everyone. 

P.S.S. Thank you Marilyn Parker for our masks which were the best looking, in all of Estes Park. 

it feels important to continue to grow

Instead of going to the farmers market this weekend, I went to work. But I still have a few things to say, some food related, some not.

Behold the watermelon, tomato, cucumber salad. This was the first course at my first dinner out since February. It was wonderful and inspires me to do more simple things with fresh tomatoes. It was beautiful, each bite a burst of flavor perfection. You can't see the very light sprinkle of sea salt but it brought everything together.

No flowers were purchased but happily I cut and arranged and placed these on the table on the front porch. The ones below were also selected and placed in a vase on a plate on the dining room table.

Will you get a load of that neon coral pink? 

Since I can't show you any farmers market vendors, let me do another type of show and tell. This is Lindy Landzaat. She is one of my physician partners on the palliative care team at KU hospital.

Dr. Landzaat is our fellowship director, and one of the best educators I have ever met. How great it would have been had our paths crossed 30 years ago, earlier in my palliative care career, but she was just a baby then. I watch as she teaches our palliative care fellows (and the rest of us) and I am so grateful for the way she listens, encourages, challenges, directs, advises, praises, but never intimidates. One of the very best things about KU is that it is full of learning/teaching opportunities every single day. Even, and maybe especially, in these later years of my career it feels important to continue to grow.  

When you work the weekend with someone, it provides an opportunity for interacting that is different than during the week. It made me want to sing her praises a bit so thanks for following my down that rabbit hole of appreciation for a colleague.

The End

our numbers are increasing

It’s been three weeks since this last post about what is happening in my work life. Friday marked the end of my 16th week on the palliative care team that is seeing the COVID positive patients at my hospital. 

Here is a quick update from the front lines: 

Our numbers are increasing.  Today we had 35 COVID + patients.  Twelve of them sick enough to be in the ICU.  Four on ventilators, 2 more headed in that direction. Our ICU intensivists continue to try waiting longer before intubating patients; instead using high flow heated oxygen which is different than at the outset of the pandemic when we worried about aerosolization of the virus using this therapy. 

We anticipate a surge to numbers in the 50’s and 60’s is coming soon. At this time we have enough ventilators and enough ICU beds. We heard on Friday that our hospital just spent 3 million dollars on gowns in anticipation of this increase. Our supply of N-95's and other PPE remains good.  

Our infectious disease specialists tell us they are cautiously optimistic about the availability of a vaccine within the next number of months. Not a specific number of months. But less than a year.  

We are seeing a few very long term, extremely sick patients, who have been hospitalized for months getting close to discharge. Not back home, and not anywhere close to being as functional as they were prior to admission. COVID-19 is causing some fibrotic changes in the lungs and I have no idea what this means for patients long term. I worry that another infection in their weakened state may mean death. Maybe those changes will get better with a long long recovery. I just don't know. Patients are also extremely weak overall after months in bed. 

Other patients who have not been quite as sick have been able to go directly home from the hospital. Overall, the number of days in the hospital for these patients are decreasing. I think this is because we are learning more about therapies - how and when to use them. 

We remain vigilant at work. Watching out for each other. Cautioning each other if we are spending too much time in a room with a patient. Reminding each other that we can't touch (or remain too close to) patients and families as we comfort them - which is incredibly hard. Keeping the masks on. Wearing eye protection. Washing the hands. This is what team members should do for each other. It's easy to slip-up, which can lead to consequences we don't want to consider. 

What I want to say is we are taking this seriously. But you knew that. There is a lot of ignorance out there though. When I hear some of the ludicrous ideas, my instinct is to correct misinformation with facts. I haven't found that to be particularly effective. Let me share the most recent bit of idiocy... "the numbers of deaths are not that high, hospitals are inflating the numbers because they get money for patients who die with COVID-19". I have no words for this. 

Instead, here is a good link to an article about what we know about treatments for coronavirus. Which ones are showing promise, which are not effective, which could be considered fraudulent. 

For those who like graphs and numbers, see increases by date in Kansas. You might have to click on the photo to read it. 

Angie's daughter is nothing if not practical

This Friday marked the end of week 13 as part of the palliative care team caring for our COVID-19 positive patients. As the days march on we continue to adjust our practice based on experiences here at KU and what we are learning from our colleagues around the the globe. We have become ZOOM experts and I think my Spanish is getting better because I am hearing it a lot. In the first 2-4 weeks if felt like the majority of our COVID positive patients were African American. In the last month the majority are Hispanic. Room after room.

I have lost count of the number of N-95's I have gone through. I don't care what my hair looks like when I come out of a room after removing my PPE anymore. I have stopped wondering about what is coming next as our numbers creep slowly up. Charts like the one below are helpful for some. It quantifies things in a concrete way. For me, this increase registers when I walk through the ICU and see seriously ill patients, on ventilators, some for as long as 6-8 weeks. First with an endotracheal tube in place, now with a tracheostomy.

New patients continue to be admitted and our numbers of COVID-19 positive patients are back where they were a month or so age. One new admission this week is young person in their 20's, who loves music. Someone's son, nephew, brother. I do not see an end in site. What I see instead is a new way of learning to live with this. I am uncertain what it will take for some individuals to believe this is real and take it seriously. Large groups of people congregating in close proximity with no masks (even with masks) is just not acceptable behavior. I have stopped talking back to the TV when people say things that are completely ignorant. It's not helpful.

Last week I participated in an interview session conducted by medical students doing a research project about experiences of providers working with COVID-19 patients.  The last question threw me for a bit of a loop.  She asked "what do you wish for right now"?  I said "more private spaces for having conversations with families". Since then I have been wondering why I said that.  I mean if I was going to wish, why not ask for a reliable antibody test to be available soon, or that a vaccine will be developed in the next several months, or we will return to some semblance of "normalcy" by Thanksgiving. Angie's daughter is nothing if not practical. I am looking for things that will help in real time. Right now. 

We watched this PBS documentary about the 1918 flu yesterday. So interesting to see that many of the things we did wrong 100 years ago, we have repeated, and continue to persist in now. The perspectives of those who lived through that time are compelling and certainly worth watching.  

As always, these are my personal thoughts and experiences caring for patients during the last 3 months, it is not my intent to present myself as an expert, just one person living through it. Much like each of you. 

the dream channel

Last night in my dreams I was on a never-ending loop of giving a talk about what it was like to be working in COVID-19 times, how the work flow had changed, what I was learning. In none of them was it going well.  

The night before that I dreamt my roommate from college came and picked me up and we were driving somewhere and it always looked like she was going to crash into something but never did. When I commented on how that was possible she said the car was in "flying" mode. Then I looked around and all the other cars were flying too. 

I can not recall what was playing on the dream channel the night before that, but I may need to keep track and seek help from a dream analyst. Or not. Uncertain times mean uncertain dreams? That seems pretty clear. 

We are seeing some patients, with very severe cases of COVID-19, taking a long time to recover. I am not used to seeing patients for multiple weeks on end. It reminds me of the old days working on the oncology unit when I would get to know patients and their families so well.

And as in those days gone by, this week as I was saying good-bye to a couple of families I have been having zoom meetings with for many weeks, I got a little choked up. The 3 sisters whose mother is going to a long term acute care hospital to see if she will eventually be able to recover. She no longer needs to be in our hospital, but she is not waking up yet. To hear those girls say "I love you mama" through the iPad as they saw her on the screen cracks the heart wide open.  Then there was the daughter and son and their mom whose father/husband is going to rehab to get stronger. All he wants is "pan dulce and galletas", which I told his daughter to absolutely put in the bag for him when she drops off his sweat pants and tennis shoes for rehab. I wanted to give her a big bear hug. Maybe someday. 

All this to say that virtual technology may not be perfect, or even close to perfect, but when it's what you have to work with, you make do. This week will mark week #9 of COVID-19 palliative care duties. As I look back, on the 25th of March there were 55,148 cases of COVID-19 in the US. Today in the US there are 1,705,754 cases and 99,784 deaths. I can not guess what the final toll will be.

I am keeping the faith, washing my hands, wearing my mask in public, taking wonderful walks, appreciating nature, loving my back and front porches, reading books, writing in my journal, doing lots of Marco Polo'ing with family and friends, and making do. Hope you all are doing the same.

 

she was absolutely enchanted by that chick

Tonight I want to tell you about the highlight of my day at work on 5/14/2020. It's a simple story, and it goes like this. 

Once upon a time, during the COVID-19 pandemic, there was an older woman with dementia in the hospital. Her name was Betty. She was a bit cantankerous and sometimes downright agitated. But at the very end of the day when she and her daughter (Judy) were connected on a ZOOM meeting, and Betty saw Judy's face on the screen, and gasped and said "how'd you do that?", it was pure magic. 

But wait, it gets better. 

The daughter turned around in her kitchen and picked up a perfectly perfect little yellow chick that she was keeping under a warming light and showed it to her mom. She held it up to the camera on her computer and the image filled the iPad screen. Betty first ooh'd, and then ahh'd, and smiled and smiled as she kept stroking the iPad screen with her finger. She was absolutely enchanted by that chick. 

And that was it. A very simple moment of absolute joy. Made possible by technology combined with a bright yellow chick... and a daughter that knew exactly what would make her mom really really happy.

The end. 

P.S. Happily brought to you by palliative care teams across the world making connections in this time of isolation.

it's just a human thing

This past Friday, at our weekly update from the medical executive staff at the hospital, we began to hear about the plan to start to "re-open" the hospital. Not that it's been closed, but our census has decreased drastically as non-emergent procedures have been delayed to reserve beds, staff, medications, and PPE for the surge of COVID-19 positive patients that would require our care. We are not seeing the growth rate we had all been dreading. Maybe we will not? Much will depend on the impact of businesses beginning to open again, which starts on Monday.

In Kansas, as of 5pm on Sunday, we have had 4,896 cases and 143 deaths. There have been 55 identified clusters in the state - 18 in long term care facilities, 20 in workplaces (including a prison and meat packing facilities), 6 in churches, and 2 in health care facilities that were not long term care homes. 

1,185,167 cases in the US with 68,495 deaths. The numbers are mind boggling. Impossible to comprehend really. But when I think of the individual faces, stories, and families I have interacted with, it is very real. This past week I spoke with a daughter whose mother is critically ill on a ventilator - she buried her father last week, 2 uncles have also died. A total of 16 members of her family have been ill. I met another family (mother, father, son, 2 daughters) all have been sick. Father is now critically ill on a ventilator, all the rest are recovering, except the youngest daughter was admitted to the hospital the day after I met them on a ZOOM meeting. None of these families able to come into the hospital to see their loved ones. 

When I hear about the protests, the demands that we get back to "business as usual", it is hard to reconcile the ignorance. And yet, if a family has not been touched by the pandemic, maybe it feels like something that can not happen to them?

Amidst the sadness and multiple deaths, I have held on tightly to three patient stories - the elderly man whose wife died of COVID-19 that was able to be extubated and discharged, the 81 year old firecracker of a lady who tells me her mother lived to be 106, who was transferred out of ICU and may get to rehab this week, and the young man with 3 little girls who is now off dialysis and slowly weaning off the breathing machine. This week when I was showing his mom what he was looking like, I asked the nurse in the room to tell him I was showing his mom what he looked like - he looked over towards me and gave a thumbs up! You can not imagine the joy that gave his mom. Small victories.

Over my 39 years as a nurse there have been many patients who have stayed with me; for differing reasons. Many of these COVID-19 positive patients will long be in my memory as well. That is not a bad thing. It's just a human thing. 

it was a sweet moment

For those who are interested in the experiences of one midwestern academic medical center's experiences with COVID-19, here is my update this week. 

In the state of Kansas we have had 2,482 COVID-19 positive patients and 112 deaths as of early Friday am. There are now 3 counties with more than 150 cases each, compare this to Douglas County where I live that has 43 cases. This is related to workplace clusters, mostly in meat packing plants. The numbers of tests in Kansas has been slowly increasing from 700 per day last week to 1100 a day as of Friday. At our hospital we are able to do around 500 tests per day and have begun to do more screening. Patients and employees are now able to be tested if they have only 1 symptom, in an attempt to catch things earlier, isolate appropriately, and do contact tracing. 

As of this morning we have 24 COVID-19 positive patients in our hospital and 10 additional patients that are under investigation. To date 69 patients who have been COVID positive have been discharged.  We continue to admit 4-5 new patients per day and this number has not changed much.

We have not been hit with what was predicted in terms of the volume of patients who might require hospitalization.  For this we are grateful, and believe it is related to social distancing, and our ability to learn from what was happening in other parts of the world.  We continue to work on plans for increasing capacity if a surge happens. We are anticipating beginning to be able to do some more routine surgeries beginning next week - only those that require regional anesthesia (blocks) and not intubation and a general anesthetic. We are also preparing for the return of some clinic visits that can not be conducted using telehealth. Processes are being changed to ensure social distancing in these settings.   

What you have read/heard about African Americans and Hispanics being disproportianately affected and dying of this disease is absolutely what we are also seeing in Kansas City. One of the most heartbreaking aspects is how often we see multiple family members affected as well. A husband admitted to the hospital the day his wife died in another hospital, 2 brothers both on ventilators in the same hospital. All of this coupled with the inability to be together and comfort one another or have traditional funerals. 

One of our pulmonary specialists spent a week in NYC and reported back on his experiences there this week. Two things really struck me in his report back to us. #1 there is no clear front runner in the medications that are being trialed to combat this virus. We are doing our best to enroll patients in studies as much as possible, it is important for scientific and not anecdotal evidence to guide our therapies. #2 the nurses in ICU's at the hospital he went to were each caring for 8 to 10 patients. If you have ever been in an ICU you know that the typical nurse to patient ratio is 1 to 2. I can not even imagine. 

In closing tonight, let me share the absolute delight I felt today when a very dear 80 year old woman gave me the thumbs up sign and a big smile as I waved at her through her glass door. I put my hand over my heart, she replied with a wink. It was a sweet moment.

new ways of doing business

Today marks the beginning of week #5 (in Lawrence, Kansas) of mandated social distancing and non-essential businesses being closed. I had to look back to see when we actually started this because the days are running into one another, and each individual one is a blur.

What we are doing at work continues to evolve as we figure out how we, as palliative care providers, fit into this pandemic. Infectious disease specialists direct antibiotic and antiviral therapies, ICU physicians manage the care of critically ill patients, and surgeons operate. Palliative care providers' niche is in communicating. Putting together the big picture for patients and their families about how they are doing. That is really hard with a virus that is so unpredictable. Deadly for some and milder for others.

What has been clear from the start is the need to have conversations with people before they get sick, or at the outset of their illness. When they are able to tell us how aggressive they want to be in terms of treatment, how much are they willing to go through, and when is it time to stop putting their bodies through things that are unlikely to be helpful? But it's hard to get across to patients and families that what we are seeing is an illness unlike those we have encountered before. Just when we think the corner has been turned, we have seen the bottom fall out. Most of our sickest patients are on dialysis in addition to being intubated, and requiring very high levels of oxygen on the ventilator. I have never seen so many patients require paralytics so they could be flipped over on their abdomens to see if that will help their lungs.

Not being able to visit is incredibly hard for families. Can you even imagine dropping your loved one off at the hospital and then having to rely on doctors and nurses for regular reports about how they are doing? Having to talk by phone and then not at all when the patient is unable because they are too critically ill. 

What we are doing is trying very hard to be a connection between patients and families in this time of isolation. Making sure they are hearing the latest updates, reassuring them that those caring for their loved ones are being respectful, careful, tender, in the care they provide. Letting them know we hear and see how impossibly hard this is. Using virtual technology has been helpful in being able to show families what their loved one is looking like. It is only when we are not able to see a loved one, do we realize how much we rely on what we take in with our eyes to help us understand a situation. I never thought that being a ZOOM "operator" would be such an important part of my job, but it's a good example of how circumstances dictate new ways of doing business. 

Finally today, in the event that you missed the One World at Home show on Saturday night - this was a highlight.  

 

keeping our loved ones close in new ways

As a new week begins, let me give you a glimpse into how things stood at the end of last week at my hospital in Kansas City.  We continue to have an average of 25-30 COVID-19 positive patients in the hospital and roughly half of those are in the ICU - mostly intubated. There also continues to be 25-30 patients who have been tested and are referred to as PUI - persons under investigation.  We have had deaths and have also had people who have been able to be liberated from the ventilator and discharged.

Overall, in the metro area, the number of patients admitted to the hospital who are COVID-19 postive continues to slowly increase.  It's too early to know where we are on the curve. There is no evidence that it has flattened. In our facility we are prepared for a "mild to moderate" surge. We are ok on amount of PPE but continue to be very judicious with use.  An area of greater concern is the potential for/likely shortage of medications required to keep patients sedated and comfortable while on breathing machines.  

There are still no FDA approved medications for COVID-19 though we continue to use hydrochoroquine and azithromycin following specific protocols. The use of convalescent serum is also being investigated.  

There remains much that is unknown about this illness. Patients are staying on ventilators for weeks instead of days. Generally when someone is on a ventilator for longer than 10-14 days a tracheostomy is done to prevent further damage to the vocal chords and allow for longer term weaning from the vent. We are not doing tracheostomy's right now because surgery on a COVID-19 patient poses significant risk for transmission of disease.  In addition, once a patient gets a trach they have significant ongoing aerosolization of secretions, and this creates a constant high risk for transmission of the virus.  We have seen patients who seem to be getting better precipitously take a turn for the worse, and some patients we thought would not survive, suddenly improve.

We are treading water, trying to be realistic and prepare families for potential deaths, while also understanding their need to hold on to the potential for a miracle. 

What we do know is that it still makes the most sense to continue our current state of social distancing, being vigilant to avoid transmission, washing hands, working from home if we can, reaching out to others virtually, keeping our loved ones close in new ways. 

let's talk ventilators

You are going to need to click on the photo below in order to make it large enough to clearly read (you may then print it out). BUT - it's worth it. Over the years, on this blog, there have been a number of posts focusing on the need to have advanced care planning conversations with those you love. Now it is more important than ever.  

Here is why. While all people may contract COVID-19, regardless of age and how healthy (or not) they are, we also know that individuals who are older, that have pre-existing medical problems, are more likely to get a severe form of the illness and are also more likely to die as a result.    

Unlike other posts, where I have discussed "code status" or consideration of what it means to be "DNR" (do not resuscitate), this handout is specifically to help you with a discussion of whether or not you would want to go on a ventilator.  This is not a decision that should be made at the last minute, and it is best made by a well informed patient rather than their family member. Which means YOU have to think about it in advance and be sure the person who is your designated medical decision maker knows what YOU want. In the very best case scenario, you as a patient would have this conversation with your primary care provider AND your medical DPOA.  

These are unprecedented times. It is very possible, some would say likely, that we are going to face a shortage of ventilators in this country. For some, a decision to go on a ventilator is the absolute right thing for them. I also think it would be a terrible thing, in a time of shortage, to put someone on a ventilator who knows they would not want to be on one, or who likely wouldn't want to be on one, but haven't taken the time to think about it in advance.  

As always, post your questions/reflections about this in the comments section. 

is doing "good enough" ok for these times?

Chris and I feel very fortunate to live where we can easily walk outside, in relative isolation, and admire the arrival of spring.

As we walk it's easy to forget what's going on, until I reach to touch something and Chris says "I wouldn't do that"... and I wonder if he's being too cautious, or am I being too lax?  

Flowers, sun, color, fresh air, the whole of it; a balm for things that are troubling. 

Tomorrow I will be working from home for the first time.  It likely won't be different from working from my office, but it feels different. I won't be able to just run up to a unit if I feel like someone needs me.

What I am struggling with is that I know what we are doing right now, using Telehealth, is maybe not doing the very best I am capable of in person. At the same time, understanding that we must be cautious, and maybe doing "good enough" is ok for these times. All of this against a backdrop of knowing we MUST preserve PPE for the most vital staff members. These are the thoughts in my head tonight.

On a positive note, I was able to address all the technology "stuff" required to work from home. With only 2 calls to the hospital help desk. Plus a bit of sweating and some nervous laughter that turned into a full throttle guffaw.

doing your part to get our world through this

I began my nursing career in 1981 in a small local hospital in Salina Kansas. In the early 1980's, when we were faced with what we initially referred to as HTLV-III, we were forced to change our practices. We had to learn to be more cautious with blood and body fluids.  In retrospect, it's hard to believe that we didn't always use "universal precautions" when caring for all patients. But we didn't.  I remember thinking to myself "I will never be able to start an IV wearing gloves, I won't be able to feel the vein as well, I will not be as precise". And yet we did change, for the better. And we learned to be quite skilled at starting IV's with gloves on. 

Once again, as we face challenges with COVID-19, we are learning new ways to do our work. I would not have believed it was possible to communicate with multiple family members using an iPad, on a pole, taken into the room by the nurse caring for the patient. But it is. Is it the same? No, it's harder because we must coordinate with the nurse, so they can take us in virtually when going into the room to provide care. While at the same time making sure we are not interfering with the life saving interventions going on. We must prepare the family for what they will see and make sure they are able to use the technology. Connecting with families and conveying compassion is harder virtually. But it can happen. We have been deeply touched by the emotions of families who have not seen their loved one "since we dropped them off at the hospital". That was obviously before they were intubated and on a breathing machine. It's hard to see someone you love like that in real life, much less on an iPad. I can only imagine the helplessness families feel, being quarantined or isolated at home, worried and unable to be present at the bedside.

These times call for innovation coupled with caution, using what we know, going in new directions, always working to be sure we are safe. Last week we worked differently than we did the week before. This coming week, I am already thinking about ways that we can work smarter than we did when we walked out of the hospital on Friday. All of this in preparation for the surge of patients we fear are coming. 

Thanks to every single one of you who is staying home. Being safe. Washing your hands. Doing your part to get OUR world through this pandemic. 

"church" at my favorite coffee spot downtown

Happy Sunday, from Kansas, where I just got done planting a Rising Sun Redbud tree. 

I had someone else plant the last 2 weeping cherries that have both ended up dying in that spot, and decided maybe I should just take matters into my own (capable) hands.  

When that was done, and after Marco Polo'ing my sisters, and sending Mary Joan a text about my accomplishment, because listen... one must announce one's personal moments of excellence to those who understand these things... I sat in the chair above and read the Sunday Review section of the NYT, where I discovered this article. This line in particular "...If in doubt, snuff me out" made me want to jump over to Mary Pipher's house (the author) and give her a double high five. I would give my eye teeth to have come up with that line. We have all got to learn to talk about the fact that we are dying. Well written pieces like this help normalize death as a part of life. A part that we are all heading towards. I like hearing others beliefs about what happens after we die. Some offer hope, others seem more hogwash than anything else... and yet, to each her/his own. 

Earlier in the day, I bolted out of bed so I could fill my favorite hours of the day with double the activity since we "sprang forward an hour" here in the US. My reward was a lovely sunrise followed by "church" at my favorite coffee spot downtown.

It never gets old. Time to think about the best/worst/most/least memorable moments of the past week feels like a worthy use of part of the day. Plus, I'll always choose a latte over communion wine , AND today there was a German Sheppard puppy at mass. I am pretty sure God laid on the floor and kicked her feet up with delight over that. 

when we are faced with death, we have a lot more in common than you might imagine

When I asked him to describe his pain, the 52 year old man with stage IV lung cancer, who was admitted to the hospital with severe shortness of breath, weakness, and pain, said "I've been shot 6 times and stabbed 4 times, but nothing has ever hurt as bad as this".

Our palliative care team was asked to see him to help with managing the pain, make sure he had a good understanding of what was going on with his cancer, and then figure out what was important to him.  When asked what he was hoping for he said "I want to live, I have things to do". He quickly followed that with "I don't know what I did to deserve this". During our discussion he said he has heard "I am at the end of my rope", then he looked at us, and said "do you think I am going to die right away?"  

We talked for a while, about lots of things - his tattoos (he said he now wished he hadn't gotten them all), how we do not believe anyone gets cancer as a result of something they have done (karma doesn't work that way), and that if we see signs to indicate he is dying soon we will tell him that (if he still wants to know). Right before we left he said "I hope the good lord gives me time to set things right and then lets me go peacefully" and he thanked us for visiting with him. 

My point in sharing this with you is just this - at first glance I wondered what would be the shared experience that would allow us to connect in a meaningful way? Within about 5 minutes it was abundantly clear. Every single day, I see evidence that despite our differences, at the heart of it all, when we are faced with death, we have a lot more in common than you might imagine. 

The second point (before one of you reminds me that the converse is also true) is that every once in a while, people you think you will be in synch with immediately, you are never able to establish rapport with. It keeps life interesting. I'll say that.

 

decide for yourself if a deeper dive into the book will be beneficial

In case you are not certain about reading this book I reviewed a few weeks ago, let me help you out by presenting a 29 minute video of the author (Megan Devine), telling you about why it's important. Then you can decide for yourself if a deeper dive into the book will be beneficial. 

Megan Devine from Chris Guillebeau on Vimeo.

so we can learn to do a better job companioning each other through the difficult times

I have taken the past 4 weeks to slowly and thoughtfully read through this book. It is one of the most to the point, helpful, practical books I have read on the subject of grief. 

Here are some reasons why I think that:

It calls out the wrongness of thinking that grief is something to be "gotten over". Who started that myth anyway?

It helped me understand the anger felt about some of the things people say (or even worse when friends/family never say a thing) after the death of a loved one.  

It includes practical advice about how to be with someone who has experienced loss. No one knows what to say or do. 

There truly are some losses that are more unimaginable than others. This book is helpful in understanding that and the physical responses that accompany loss. 

It is well written by a woman who herself has experienced an unbearable loss. This should be required reading for all people. So we can learn to do a better job companioning each other through the difficult times we have been through already, and those we will surely face in the future. If you are grieving and are not sure where to turn, you may want give this book a read. If you care about someone who is grieving, you may want to give this book a read. Please add your thoughts to the conversation if you have read it already, or add them as you read, so we can all continue to learn from each other. 

it is not our job to make decisions for people

 

This Saturday and Sunday I did my turn at "weekend duty" at the hospital.  I met 3 new people with brain tumors and their "families".  One of them was able to get home Monday. Her friend from high school is going to take care of her with hospice support. She likely has weeks to maybe a month to live.  Another of the three died very quickly overnight Saturday. His daughter from up north and son from down south flew in and were able to see him before he died. The last man is likely going to a hospice house here in town tomorrow. To a less "medicalized" setting, where his family can still be with him while he gets the intense care his symptoms require. He has days to live at the most. Three separate plans for 3 different situations with 3 very similar disease processes happening. I could just as easily have had a patient who elected (even after hearing we thought she had weeks to perhaps a month to live) to keep doing "everything". Things like trying to get stronger with therapy, procedures like drains and tubes, continuing to get lab work drawn and x-rays done, going to the ICU if needed.

These kinds of days are not uncommon in the palliative care world. I tell you about this to illustrate the point that it is not our job to made decisions for people. It IS our job to listen to what they want and try to figure out a good plan that best meets their needs - while giving them time to come to terms with what is happening. We take none of it lightly. Sometimes upon entering a room, we can literally feel people recoil from us. I even had a patient tell me once that we were the "you're dead" people. Do I sometimes disagree with choices people make? You bet. Do I say that out loud? Nope. Do I try to make sure people understand exactly what is involved in their choices no matter what they choose? Absolutely. My goals when I enter a room are to do my best to inform people about all their options, to listen and provide support, to convey that I care, and to make sure symptoms are well controlled to the greatest extent possible. This is what palliative care is.

how come no one trains you for that

There are many people, who as part of their job, are required to have ongoing, regular training in cardio-pulmonary resuscitation.  Which of course made me think about the entirety of the lay public, who may at some time encounter a person who is dying, who they know doesn't want to be rescued but still needs to be responded to. And I was thinking, how come no one trains you for that?

This is my tiny effort at starting the conversation about what you should do if you encounter the situation.  You should not expect to receive a certification card in the mail when you are done reading this post. But it may make you do some more reading about it, and begin to consider how you will react.

So lets just say you are with your elderly or chronically ill relative or friend and they suddenly become unresponsive and you don't know what's happening or what to do, but you can't find a pulse and you think this person may have died, or is taking their last breaths.

What do you DO?

1. Deep breath - as in YOU take one

2. Ask yourself if it would make sense to put them through efforts at trying to revive them. We are all dying sometime, if it might be sooner rather than later for this person, would it make sense to try to resuscitate them just so they can die again? If you don't know (or are just scared shitless and can't think what to do) go ahead and call 911. No one is going to fault you for that. UNLESS the patient is enrolled in hospice, in which case you call them. When you are enrolled with hospice THEY BECOME YOUR 911.

3. The number one thing you can do if you are with someone who may have just managed to die in a way that we all say we want - "quickly", "suddenly", "painlessly", "in my sleep", is to be sure they are comfortable, if they don't seem comfortable, and especially if they look like they are struggling, you need some professional help. Same as #1 above - call hospice or 911. 

4. If the person looks comfortable and is taking a few last shallow breaths, you can be the loving presence we all hope to have as we are dying. You can be the voice of calm and reassurance, let them know you are there, you will stay with them, things will be ok. Some of us can do this naturally. It's instinctive. For most of us though, it takes training/acting. The more we are exposed to things like this, the easier it becomes. Most of you will not be exposed to it regularly. Which is why thinking through things ahead of time is essential. 

If you have a family member who you think may die in the coming months/years, it is worth thinking about this. In the moment you may panic, which will make you less effective. I am not endorsing that we all become hospice or palliative care providers, just that we be ready to care for our loved ones (or a stranger in a loving way), if we happen to find ourselves present at, or near, the moment of death. The best case scenario is to have conversations with family/friends about how they want to be responded to. Get hospice involved early if it makes sense. Hospice will help you prepare for this. Unfortunately, this is an easy topic to put off until it's too late. Thus my reminder that thinking ahead, about how YOU will respond, is so helpful. 

I have mentioned A Handbook For Mortals several times over the years. This link will take you to a site where it is now available on line. This book is a guide for facing serious illness. It is written for lay people and covers many useful topics in a thorough, readable, understandable way. I have purchased many copies of this for people over the years. Every home should have a copy, along with an atlas, a book of fairy tales, a dictionary, and a first aid book. You can buy it here.

This topic was triggered by 2 recent events. A friend telling me of the sudden death of his 94 year old mother, in his arms, at her home. I know this was hard for him and I wanted so badly to have been able to roll back the clock. To talk him through the situation. The second was a death in the hospital that caught me off guard. It involved encountering the raw, shattering, grief of a mother losing her daughter, and seeing in those moments when she was dying, the need for a strong, calm, reassuring presence, in the face of such devastation. 

If you are still reading, I apologize for the unusual length of this particular post. There was not a way to shorten it. Actually I could go on, but I will stop now. Please add your experiences and questions in the comments.

outside the hospital DNR forms

This week's palliative care discussion is on the topic of Outside the Hospital DNR forms. This is different from an Advanced Directive, because in addition to outlining your wishes regarding CPR and other medical interventions, it is signed by a physician. Which makes it official. This is necessary in order for Emergency Medical Service providers (EMS) not to attempt resuscitation if they are called.

Sometimes people think if they have an Advanced Directive that outlines their wishes, or tell EMS personnel they don't want to be resuscitated, or they have DNR tattooed on their chest, it will prevent them from having CPR performed. No, no, and no. Below is another example of a form that can be used. It is a bit simpler than the one above.  

The hot pink form in the first photo is a TPOPP form.  It is for Kansas and Missouri.  TPOPP stands for Transportable Physician Orders for Patient Preferences.  It has 4 areas and allows you to outline your wishes about CPR (do it or don't do it), what level of medical intervention you want if you have a pulse and/or are still breathing (1. comfort measures only, 2. do some limited things and going to the hospital is ok but likely no ICU level care, or 3. go ahead and take me to the hospital - even the ICU is ok with me), your wishes regarding medically administered nutrition (including feeding tubes), and finally signatures.  

It is paramount that you talk to your medical provider about a form like this if you want one.  They are generally for people who have a serious illness and know they don't want to be resuscitated if they die. For me, at my stage of life, and knowing that I want the first ticket I am handed it makes sense for me to have one. Remember, I see a lot of stuff and talk about serious illness everyday.  This is not something to be done without a great deal of forethought.  

I will be standing by for your comments and questions.  

Helpful links:  
Here is a place where you can see if your state has a specific form for an outside the hospital DNR form: POLST programs in your state

For more information about the specific parts of a POLST (Physician Orders for Life-Sustaining Treatment) form: Elements of a POLST form

if I tumble off this wall and you think I am dead but aren't sure

April 16th was National Healthcare Decisions Day, so it seems right and proper for me to remind you of the importance of having an advanced directive (AD). An AD outlines what your wishes would be if you were seriously ill and could not let healthcare providers know about your preferences for care.   

If you are 100% confident that your loved ones know exactly what you would want, and will be sure your wishes (not their wishes) are carried out, go to bed tonight and rest easy. If you are not, best to complete an AD. On a regular basis I encounter families who say “I know she wouldn’t want this but I just can’t give up on her” or “... "I have to give him every chance to get better”... and decisions are made. If in either of these cases just described, there is an AD in place that outlines what you want, we are obligated to follow that.  No matter what your family or designated decision maker says.

Here’s the deal though. Make it clear what you want. Outline your minimally acceptable quality of life. Things like this:
I must be able to recognize my loved ones and communicate with them.
I must be able to feed myself.
It is not uncommon to see "I must be able to wipe my own butt".

Spell out what level of disability you are, and are not, ok with.
Specify if you would be ok with a feeding tube and a tracheostomy. Google those things to see what they look like to be sure. If you have to have them permanently is that ok with you?
If you have to be cared for in a nursing home are you ok with that or must you be able to completely care for yourself to consider life worth living?
How long are you willing to remain on a breathing machine/ventilator before you want to focus on comfort as your top priority? FYI - if it’s longer than 10 -14 days you are going to need a tracheostomy.
If your kidneys are shutting down are you willing to be on dialysis? What if it’s going to be permanent? Are you ok with going 3 days a week for 4 hours to do that? Again, google that to see what it entails.

You don’t need a fancy document for this. Write it out and go over it with your physician/NP/PA. Ask them to place it in your medical record. Take a copy with you the next time you go to the hospital so they can scan it into your electronic medical record. You can go to mydirectives.com and do all of this online and then send it to your doctor and your family members. That is how I did mine. They remind you every 6 months to review it and be sure your wishes haven’t changed.

Finally, talk about this stuff with your family. If there are specific things you think they need to know to know, tell them. Remind them about it regularly. For example, last week when I was working on top of a 6 foot rock wall out back I quizzed Chris with specific scenarios... “if I tumble off this wall and you think I am dead but aren’t sure, and I look comfortable what should you do?” To which he replied “wait at least 15 minutes to be sure you are actually dead and then call the ambulance”. Which is exactly the right answer!

Next week I am going to tell you about another document to think about having in your home, if you, like me, understand that your family might need some help from emergency medical services, but you do NOT want attempts made at resuscitation. Did you know they are obligated to attempt to revive you if someone calls them? UNLESS you have a specific form that is signed by a physician.

so he could ask the hard questions about what his death might be like

Most people who read this blog, based on your comments, think palliative care is a good thing.  A resource to help.  An extra layer of support for those with serious illness.  Oftentimes however, we find when we go into patients rooms, we are met with resistance or fear.  We can be thought of us as "the bearers of doom and gloom", the ones who "take away hope" for the patient who "is a fighter and is not giving up".

Tonight I present this very humorous, absolutely spot on, illustration of just exactly what I mean.  Created by Jared Rubenstein, MD.

There are days when we have to work really hard to be helpful.  To try to be sure people are staying comfortable as they are maintaining hope and continuing to fight.  Or when they recognize they want someone to talk to about what they will do if things aren't going the way they want them to.

In the last month I recall vividly the adult son of an octogenarian bristling at the thought that we would be involved in the care of his father who had always been in robust health... and the patient telling us after our meeting, how helpful it had been to talk with us so he could ask the hard questions, about what his death might be like, and what could be done to keep him comfortable whenever he was dying.   

you mean they are just going to starve to death?

For some time now I have been wanting to share information here about tube feeding or artificial hydration & nutrition.  In particular, about its role for people with a serious illness.  This week, after hearing yet another family member say "you mean they are just going to starve to death?", when faced with stopping tube feeding or TPN (total parenteral nutrition - feeding in the vein), I decided tonight was the time.  

Let me start with some basic statements about tube feeding and IV fluids or TPN in general:

1.  People with serious illness who are nearing the end of their lives die from their disease, not the lack of nutrition. 
2.  Continuing (or initiating) tube feeding in people whose bodies are shutting down can increase discomfort.  
3.  Continuing IV fluids or TPN can do the same as #2 above. 
4.  When people are aspirating because they can no longer swallow safely, tube feeding doesn't stop them from continuing to aspirate. Even if they are not eating food, they can aspirate on saliva, which just as easily can cause pneumonia.
5.  If someone has a serious illness, and they are still in reasonable health, with a good functional status, tube feeding can make sense.  Examples include patients with ALS who can not swallow, a patient with a cancer that is obstructing their gastrointestinal tract, patients with head and neck cancer receiving therapy that make it difficult if not impossible to swallow. 
6.  Patients with advanced dementia do not benefit from tube feeding. Careful hand feeding may be enjoyable to them.
7.  Most states have laws that allow for withholding or withdrawing tube feedings, especially if a patient has some written directive that outlines their wishes.  
8.  Tube feeding does not automatically make people have more energy or gain weight. 

The decision to receive artificial hydration and nutrition should be based upon an individuals personal goals.  Before getting one may I suggest that you write out all the reasons why you think it will be helpful.  Then sit down with someone who can provide the facts on whether tube feeding or TPN will accomplish what you are hoping it will.  At the same time you are asking about benefits, ask about side effects of tube feeding.  

My goal tonight was to open a discussion. In right around 400 words. Questions are encouraged. Next week I will tackle the topic of "comfort feeding".  

P.S. please note I have including nothing here about the pediatric population and tube feedings. I have no clinical experience in that arena.  

we go for things like ax throwing

You might think that palliative care teams engage in activities like mindfulness meditation, yoga, or journaling for self-care.  Probably, some do.

But not my team. We go in for things like ax throwing.  With great gusto actually, after we had the technique down. There may have been cursing too. Ax throwing and cursing just seem to go hand in hand.  

to spread her quilt over her in the last hour of her life

This week at the hospital I spied some especially lovely handiwork in the rooms of a few of the patients I was seeing.

Quilting and love of fabric art is an immediate way to connect with people.  It lets us know we have a common language.  I bonded well with the woman who made these quilts during our very first visit.  She knew when she told me to be honest with her about what she was hoping for, and I told her I would, I meant it.  We had good talks during the week I knew her.  About what was possible, what was likely, what her family would need as her body was shutting down.  And we talked with her family when she not able to talk, about where was the best place for her to be if she could not be at home. Which is what they really wanted to make happen for her.

This quilter took matters into her own hands, as is often the case.  Early one morning this past week she died.  While her daughter and husband were on the way to the hospital.  It was a gift for me to be able to be there with her.  To spread her quilt over her in the last hour of her life.  To be sure her mouth was moist and her hair was combed.  To make sure she was not suffering, to whisper that her family was on the way, and wanted her to know they loved her, and lastly to let her know I would be sure to tell them how peaceful she was as she was dying.  

Dottie sent me this poem by Saint John of the Cross last week.  

And I saw the river
over which every soul
must pass
to reach the kingdom
of heaven
and the name of that river 
was suffering:
and I saw a boat
which carries souls
across the river
and the name of that boat
was love.  

I am not sure at all about the concept of heaven.  What I am certain of, is that the most important skill you need when you are with someone who is dying is just to care.  I was not with Angie in the last moments when she was dying. You have no idea how much I loved paying forward the caring that another woman showed my mom.  

new "old" memories to talk about

I had mixed thoughts tonight about sharing details on a blog about our annual ritual of visiting mom and dad's graves.  It is private, personal, and still painful in ways, and yet... it is such a part of each of us and I love that we do it every year.  

We always start with the easy part.  Cleaning, trimming, taking out the old flowers, arranging the new.  Each person has a job.

And we always take a whole bunch of pictures.

Just because your parents are no longer with you, is no reason not to still include some part of them in pictures.  

Each year there are new "old" memories to talk about.  It's funny how we each have similar and different recollections about growing up and about Ray and Angie when they were sick.   

There are plenty of tears, as well as laughs, and in the end I think we all feel a little less heavy.  This year we brought our putters so Dad could put a little luck on them.  And there was a special rock direct from Lummi Island that Mary Ann wanted mom to have. 

Who knows how many years of this we will have left.  What I do know is that each year I feel myself able to talk about more things. And I feel incredibly lucky to have people I can do this with.  

So in the end, I decided sharing this was the right thing to do.  Because I think it's healthy to have rituals like this.  AND it's important to talk about death and how we help each other through it.  

 

the direct flight with no lay-overs in any kind of nursing facility

This month, at an annual check in with my primary care doctor, we spent time talking about my advanced directive.  I want her to be fully aware of my preferences for care, if I have some kind of devastating injury or am diagnosed with a serious illness and can't tell her myself.  Chris and Dottie (the people I have asked to serve as my DPOA's for medical decision making) already know how I feel, and so do all the people on the team that I work with, but because some find my wishes unorthodox, I wanted to have the conversation with my primary care provider in addition to her having a document.  

Those of you who are long time blog readers will be familiar with the phrase "I want the first ticket I am handed".  It is an easy way for me to tell people that:

1. I know I am going to die of something - we are all getting "a ticket" out of here when our number is up
2. My highest goal is to avoid prolonged debility (being unable to care for myself)
3. I am totally ok with giving up the possibility (and even the likelihood) of more time on earth to avoid what I believe would be the suffering of dependency
4. If I can die suddenly as a result of an accident while I am in my prime, and totally functional, so much the better

In other words, if I am gravely injured or ill, and likely to die as a result of my injuries BUT my family is told there are things that can be done that might SAVE me, go ahead and let me go.  I have been around enough intensive care units to know that the things that can be done to save me may also leave me in a less functional state or with some kind of cognitive disability.  Even if the physicians tell Chris and Dottie "there is a greater than 50% chance she will be just fine" - No. Thank. You.  I want the first ticket I am handed.  I'd just as soon die now, if I am already half the way there, rather than be saved and have to go through it all again later.  

This can be a hard concept for people to get.  Why would I not want things to be done that could save me?  I have seen people lose the ability to care for themselves and do not choose this for myself.  In the conversation with my primary care doctor, I could see the light go on and clear understanding occur when I used the phrases "I want the first ticket I am handed" and "I'd also like the direct flight with no lay-overs in any kind of nursing facility".   

Simple analogy is a wonderful tool.  Especially for difficult conversations.  

the future of palliative care is so bright it brings tears to my eyes sometimes

Today at 7:24 am, before embarking on a full day of palliative care duties, 7 of us on the palliative care team at the University of Kansas Hospital in Kansas City, completed the first annual "stairs challenge".  Two of our fellows, two social workers, two APRN's, and a chaplain. 

We had wanted to do the "Fight for Air" climb sponsored by the American Lung Association but didn't get signed up in time.  In that event you climb up 42 floors to the top of Kansas City One Place.  It is a total of 902 stairs. 

After carefully evaluating all the staircases at the University of Kansas, we selected the Murphy stairs, calculated that we would have to climb them 8 times to get 920 stairs and 48 flights and headed out with extreme optimism.  I had calculated it might take 20 minutes.

I underestimated us.  I brought up the rear, coming in last with a time of 17 minutes and 31 seconds.  Considering I am 20 to 30 years older than the rest of the bunch I feel just fine with that time. 

In case you can't tell by this photo, I work with some pretty amazing young people.  The future of palliative care is so bright it brings tears to my eyes sometimes.  Thank you Ben, Kristi, Kate, Margaret, Vincent, and Ashley for a great start to a Friday. 

I am certain they can hear with their hearts

There is a story to this pie.

It was mentioned during a visit with a very dear family whose mother I cared for last week. 

They were holding the most loving vigil at her bedside. 

Talking about important things.  Like the peanut butter pie made by Mike's wife.

And how it's the most requested dessert at family gatherings.

And the uproar that ensued when cookies and fudge were substituted for it this year.

I do not know if people who are dying can hear with their ears what the people around them are talking about.  But I am certain that they can hear with their hearts.  I sure hope when I am dying the people around me are talking about important things like peanut butter pie, shrimp pasta, good wine, and american garlic bread.  AND that recipes are being passed on.

You know I had to try this.  Because it sounded good.   And it felt right.  I will be making it again.  Because it is easy and that thin layer of peanut butter between the crust and the filling is insanely tasty.  I added the chopped peanuts on top.  Just because. 

one last thing before I go

Below is a link to episode 597 of This American Life.  If you have not heard it you may want to listen.  It is incredibly poignant.  In particular the first half.  About the wind phone. 

 This American LIfe - One Last Thing Before I go

Have some Kleenex around.  Or a hanky.  Then go get that old rotary phone you have been wondering what to do with.  And start dialing. 

there is a lady there who has the best recipe for pancakes

This week, when taking care of a woman who was dying, I asked her if she could do anything she wanted in the next few days before she died what it would be.  She looked me straight in the eye, smiled, and said  "well I would go down to Joplin because there is lady there who has the best recipe for pancakes.  They are dollar sized and you can get all you want".  "Boy are they good."

Everybody has a story.  A story about the beginning, the middle, or the end of their life.  I have heard stories that are amazing, tragic, courageous, heartwarming, incredibly sad, and totally unbelievable.  My very favorite stories, the ones that I will remember for ever and ever and ever, are the plain-old ordinary stories.  Like the lady who wanted to get home so she could see the first snowfall out of her picture window in the living room, and road trips to Joplin for dollar sized pancakes. 

Before Loretta got too sleepy to talk anymore, we discussed packing our overnight bags, getting in the car, and heading south.  We decided when we got there we would sit at the counter instead of a booth and order bacon on the side.  I told her I would let the waitress know that we both like lots of syrup so we would need extra... and to keep the coffee coming.  Then we smiled at each other and she closed her eyes and I carried on with my day. 

The end. 

"...I am making a shape for my death, so that I, and others, can see it clearly..."

Cory Taylor - Image from The New Yorker

In my day to day work with people who are dying (and their families), I sometimes have conversations with patients about how they are feeling.  On a more existential level.  For example, what is it like to be facing the end of your days.   I don't generally ask that question.  I am more of a side door person.  The conversation often starts by asking if there is anything they want to talk about.  Followed by "are there things you are worried about?"  Sometimes people who are nearing the end are scared about what it will be like from a physical perspective.  But they don't ask because... well because they are afraid, or they think they shouldn't, or they think that I should bring it up first.  So I do.  Mainly I want to alleviate any fears about the possibility of great suffering. 

However, there are many people who prefer to just work all this out alone, in their heads, or with a trusted friend.  Or if they are very lucky, a chaplain like my sister Dottie.  And, every once in a while, we get the opportunity to hear from someone going through a serious illness.  Someone who wants to share what their experience is like in a very public way.  I for one,  am always grateful to hear what they have to say.   

You might want to read this if you have wanted to have such a conversation.  The opportunity to ask anything you want, about something we don't talk about because we don't know what to say to a person who is dying, or their family.  Grab a glass of wine.  Make yourself comfortable.  You may want to read it twice. 

"... that is what I'm doing now:  I am making a shape for my death, so that I, and others, can see it clearly.  And I am making dying bearable for myself".

Thank you Cory Taylor for the signposts you have hung for all of us. 

prolonged dying

The day-to-day life of a palliative care nurse, involves seeing patients who have been critically injured or have a chronic illness they are dying as a result of.  When meeting with them (and their families) the most often UN-asked question is "how long do I/they have?".  When people don't ask, it's usually because they are afraid, because they think the doctor would tell them if they knew (don't bet on it), or sometimes they just don't want to know. 

When I have a meeting where no one asks,  I usually bring it up, and find out if they want to know what I think.  Sometimes they do, sometimes they don't.  Family members often do.  If they want to know, and the patient doesn't, we talk outside the room.  These conversations always begin with the fact that accurate prognostication is one of the most difficult things we do.  It is also accompanied by an explanation that we are likely to be wrong, that we use the best tools we have, and it's important for them to understand that everyone's body shuts down in it's own time. 

This week I took care of an 80 year old woman who was imminently dying for 5 days.  Each day on our rounds, I could see her children questioning themselves, wondering if they did the right thing.  "If she is taking this long to die maybe we gave up on her too soon?"  People are surprised that someone can live for days and even weeks without eating or drinking anything at all.  But they can.  And they do.  And it doesn't mean a wrong decision was made, it just means there are things we have no control over. 

We do have control over making sure dying people are comfortable, that their family members are supported, that we visit them often even though there is nothing to offer other than support,  answering questions, telling them what we are seeing, and providing reassurances that they are doing the right thing.  Prolonged dying is a recognized phenomenon in the medical literature.  We can't predict which patients may experience it.  My hope is that this 400 word tutorial on the topic will help YOU know it happens.  Regularly. 

We are all in this living and dying thing together.  I like to think one day we'll be as comfortable talking about, and supporting each other through dying, in the same way we do the other ordinary moments of life.  

"...we upheld our promise to continue to respect his wishes..."

This morning when I came into work, my eyes flashed to this headline "We didn't save his life, but we didn't disrespect him either".  A good read from the Washington Post.  Link below in case you are interested in this sort of thing.   If you aren't now, trust me, there will come a time.  

https://www.washingtonpost.com/national/health-science/we-didnt-save-his-life-but-we-didnt-disrespect-him-either/2017/02/03/74612afe-d1f6-11e6-9cb0-54ab630851e8_story.html?utm_term=.d52f2f1f2c16