Sunday, February 15, 2015
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| 2014 a very special thanksgiving Chica and the whole family |
On a regular basis I am meeting with patients and families at crucial times of their lives and helping them make decisions. So far I had been very fortunate that nothing really serious had happened to anyone in my family. In August of 2014 my mother in-law “Chica” was diagnosed with laryngeal cancer, she subsequently had a total laryngectomy and reconstruction of the larynx in September which included a 4 week long hospital stay (due to some complications and wound healing issues) and another 11 days in rehabilitation.
The following are the lessons learned from my experience as one of several caregivers helping with my mother in law’s care while continuing my typical duties as a mother, wife, and physician. In the spirit of the baseball World Series here are nine innings worth of lessons:
1. Meet with your loved ones and know their wishes, and health information
Even though I have been part of the family for 15 years I really did not know enough details of Chicas health until she asked me to be her alternate medical power of attorney last summer. We had “the talk” in which I was able to get a good feeling for what made life worthwhile living and what was important to Chica. I started a list of all her medical problems, surgeries, allergies, medications, names and contact information of physicians and pharmacies.
We always carried copies of the list and brought it to appointments and when checking in the hospital for surgery. It was all different medical records at the ENT-oncologist, Plastic surgeon, cardiologist, primary care and endocrinologists and the list always proved very helpful. It makes a lot easier to write see the attached list on the forms, or pass it on to the person inputting the information in the computer.
If you are thinking of changing your documents don’t put it off, before it becomes an emergency. Chica had considered changing her will for several months and in addition of the shock of learning she had cancer it became a relative emergency to contact her lawyer and change her will and other pertinent documents.
2. You are only ready to hear so much
Having several people made it easier for all of us to understand the proposed procedure and ask questions about what to expect about recovery and what life would be like. It seemed that even though the physicians were doing a great job explaining the planned procedures, It was a good thing to have several people there because we all remembered different aspects of the conversation and asked different questions.
3. Social Media can be a good source of support and to get information.
One of the first things I did was to join a couple of the available support groups for Laryngectomees (Lary’s) in Facebook. Some groups were closed and I requested membership. Once I joined I described that I was there as a family member of a laryngectomee. The Strictly Speaking administrator and other members warmly welcomed me and encouraged to ask questions to the group. They suggested I look at the website WebWhispers.org which turned up being very useful because there was a great wealth of resources including instructions for care after laryngectomy, suppliers, tips for humidifying air, getting a bracelet, getting a TTY telephone etc.
I like being in the group because people will pose questions and the others in the group will make helpful suggestions to the questions. I feel comforted that I could ask questions to the group if I need to.
From the Laryngectomy Care Club group I found posts from a doctor who wrote a guide to living after a laryngectomy. He is a pediatrician and he had a laryngectomy
- The Laryngectomee Guide [Kindle Edition] By: Itzhak Brook M.D (to download a free PDF of the Laryngectomee guide click this link)
Youtube
- Communication after laryngectomy.mov: it is brief and a bit humorous at times, these laryngectomee persons highlight the challenges of having had a laryngectomy. Chica and I had a good laugh watching this while learning useful information.
- Total Laryngectomy education: Patients and physicians at The University of Kansas Department of Otolaryngology discuss expectations and experiences for patients and families planning for a total laryngectomy. Very detailed and it was perfect when I was trying to absorb as much information as I could in a short time.
- How to provide emergency care to Neck Breathers: I can’t believe that in as many times that I have taken the basic life support and the advanced cardiac life support course (at least 10 times) I have never once been instructed on the basics to assist a laryngectomee or other neck breather experiencing breathing difficulties. Dr Itzhak Brook has a detailed video on how to do it.
- How to use a PEG tube: There were many videos out there of people showing how to do this. I made playlist of the ones I found useful. As a physician I have many time written orders to administer medications and feeds via PEG. Getting to administer them was a little intimidating and stressful at first. We had complications with the feeding tube getting clogged up and were very glad to have the home health nurse come and troubleshoot it for us. Just reinforces to me how amazing nurses are!
4. Advocacy
As a family member you are the biggest advocate for your loved one. One day as I was leaving to the hospital my husband said “don’t be too tough of the doctors and nurses” I told him that if Chica was in pain I was going to be tough. As family member we were on top of calling the nurses for suctioning, assistance with pain, anxiety, etc. With some complications during the hospitalizations we sometimes ended up changing floors and rooms, and while the major issues were addressed like breathing and heart rhythm problems, sometimes other details got missed on like when the last bowel movement was. Honestly if I was in charge of the hospital I would make sure everyone got asked about their bowels daily. I would also give patients the option of waving a flag like this one:
Ok I admit that I saw this flag at the Austin City Limits festival and have been waiting months for the opportunity to use it.
5. Use of Technology to communicate
It was very challenging for Chica to communicate at first. She had her larynx removed so she couldn’t talk and she had her right arm in a cast and immobilized because that had been the site from where muscle had been removed, she also couldn’t start using an electrolarynx right away while her tissues healed. So essentially she was left with the non-verbal language and using her non-dominant left hand to communicate.
- Ipad apps:
- We tried the free version of the verbally app which had several common words you could click on. Unfortunately with the free version you cannot customize phrases and the paid version is very expensive $99. The main reason this app didn’t work for Chica is that the text was too small in the ipad mini for her to read.
- TouchVoice: this app had very big letters that were easy to use and also had many useful short phrases to click on. It was $20 but it ended up being worth every penny. I think this app would be very useful for any other with speech impairments like from stroke or ALS.
- TTY telephone: It took a very long time to get a TTY telephone from the state of Texas. When it finally came it was not as easy to use as Chica needed to use one hand for the head set and type with just one hand. But it is nice to know you have an option to communicate.
- Apple FaceTime: This has worked nicely as it is as close to talking to Chica in person and we get to see her lips moving and some other non-verbal language and it is relatively easy for her to use.
- Electrolarynx: Because of previous scarring from radiation therapy and the skin grafts Chica has to use an electrolarynx with an oral adaptor. It was very frustrating at firs for her to get words out as it requires for you to exaggerate your mouth movements
- Good old pen and paper: what can I say you just write what you need. At first this wasn’t an option because of the 3 weeks Chica had her right arm in a cast.
6. Caregiving sandwich, learning to say No! And letting go
I am also the parent of a high school freshman and a 4th grader and found myself just barely getting everything done. I usually like to feel like a very bold an empowered woman who can do it all. I had to get better about saying NO this is interesting but I can’t do that at this time! I also had to let go of things that are usually somewhat important to me like making the bed. And yes we ended up eating a lot of to go food but so what! Don’t judge me.
I also learned to ask for help. My colleagues were wonderful in helping with some of my duties of clinical coverage so that I could take 1-2 days during the week to be with Chica at the hospital.
7. Caregiver as a cheerleader
Rehabilitation is hard and without loved ones cheering you on it would be easy to just do nothing. When you are so worn out and deconditioned from a prolonged hospital stay even small things like getting out of bed and walking within the hospital room seem to be big chores. Chica’s three occupational therapy objectives were seemingly simple #1 to go to the bathroom by myself #2 to take a shower by myself and #3 to go home to Rockport. The objectives #1 and #2 were achieved prior to leaving rehab, #3 took a few months but she did it!
Chica said she felt very encouraged when we were there being supportive and cheering her, like when we asked her to get out of the room and walk to the nurses station and then clapped and celebrated with her when she actually did. As a family we got organized to take turns so that Chica would have a companion every day in the hospital. Some of my family members had to use the FMLA benefit at their work.
8. Live where you are happy
Initially when we had met with the ENT we asked about his thoughts of Chica returning to live by herself after having a laryngectomy. He said he would not recommended. Thinking about not living on her own was very disturbing to Chica and she struggled with it but made peace of the idea of having to sell the house and relocating closer to family in San Antonio. The whole rehabilitation process was very long and she temporarily moved in with one of her daughters. However after a few months she went back home to Rockport and had a person who had been housesitting stay with her. She was very happy to be back with all her friends. Her friends were patient in trying to understand her using her electrolarynx or even writing like in a loud restaurant. Eventually Chica decided to stay put living on her own. We knew this may not be as safe as having her closer where we could help but living on her own was definitely was the happier option.
Bottom of the Ninth!
9. Crazy and hectic times can be good!
In the middle of all the craziness these were both the best and the worst of times. Here are some examples of touching moments:
- Seeing Chica saying goodbye to her brother right before surgery and telling him “you are the best brother ever and I love you!
- Joining hands and praying together as a family for Chica’s healing and for the health care professionals caring for her.
- All the family in the waiting room while Chica was undergoing her 7 hour surgery.
- We are closer and spend more time together as a family.
- Hearing Chica one of the first times use the electrolarynx to say “Hello everyone I love you” and saying to her ENT “thank you for saving my life.”
- Chica has new heroes: many doctors but in particular her ENT who took the cancer out and the cardiologist who had to cardiovert her after going into atrial fibrillation. The nurses who were always so kind and supportive. The chaplain and priests who prayed with her and help her lift her spirits.
- Greater appreciation for the simple things in life! Breathing through your nose, speaking, eating, going to the bathroom, all this things that we give for granted all the time
Photos credit: David Ross
Sunday, February 15, 2015
Friday, February 13, 2015
by Emily Riegel, MD
With all of the marketing and promotion of February 14th as the day of love, it's a hard day not to notice. When I walked into my local grocery store the day after Christmas and saw shiny red hearts hanging from the ceiling over the huge candy display, my first thought was “Seriously, I’m not even finished eating all the Christmas candy yet!” You can’t make it through a day without seeing some kind of reminder that you should love someone, and that someone should love you. Candy and cards and jewels and smartphones all costing money and seeming perhaps unoriginal and empty gestures of love.
What can we do to show that we really, truly care about the people we love ?
What if we gave gifts that are deeply personal, cannot be bought, cannot be sold, and could prove to be invaluable for our loved ones?
What if, instead of buying a card written by a stranger and mass produced to be sold to thousands of people, we wrote our own kind of Valentine?
What if we engage in a new kind of Valentine tradition?
What’s the new tradition? What could this amazing gift be, you ask?
It’s something super romantic, maybe even a little bit sexy.
It’s…wait for it…
An advance directive.
Maybe even Durable Power of Attorney paperwork.
BOOM!
Yep, it is THE gift everyone wants this Valentine’s Day.
Imagine it. You and your sweetie are sitting down at your favorite restaurant. The lights are low. The violinists are meandering about. You look into her eyes. You say, “You know that I love you more than I have every loved or will ever love anyone else in this world. You are my beloved. You are the person who knows me best.”
You step up from your chair and, at her side, you take to one knee, as you hold her hand in yours.
You look in her eyes. Time stands still as you say to her, “No one else could ever be so important in my life as you are. Darling, will you make me the happiest man on earth, and will you please be my durable power of attorney for healthcare decisions and let me talk to you about my wishes should I ever be incapable of making my own medical decisions?”
She begins crying as she takes your hands, and she declares, “Yes! Yes, with all my heart!”
The two of you embrace as the entire dining room, all eyes upon you and your love erupt into cheers and applause. The notary public steps forward as you sign your names to the forms. The violinist begins to play that Peter Gabriel song, as her soft lips find their way to yours and you kiss.
Sigh.
Isn’t that the most romantic thing you’ve ever read?
It’s true, I may have a warped sense of appropriate gifts, which my husband will attest to regarding the time I decided that Father's Day was the best day to find out how he would want me to make decisions for him if he were severely burned and was going to have to lose all his limbs in order to have even a minimal chance of survival…but I think I made up for it when I wrote this love letter for him.
In all seriousness, though, why don’t we start to use Valentine’s Day as a day when we take time to sit down with our families and loved ones who need to know our wishes, and talk to them about what matters to us in terms of quality of life and healthcare? If this is the day when we are supposed to partake in acts of love, why not give one of the most loving gifts out there?
This is not to take anything away from National Healthcare Decisions Day, but, QUICK, tell me what it is? Are you able to immediately remember what the date might be? Are all the stores you walk into decorated with reminders for NHDD? Is your kid’s class having a party on NHDD, which you forgot to make cookies for until midnight the night before? I’m just saying, it’s hard to remember things, and it’s hard to remember what happens on which days, so if we link these conversations and discussions to a day that we can’t really escape knowing about, we are more likely to remember to do it, to make it our own tradition.
Some suggest this be done at Thanksgiving, or during the holiday season when families are together and these discussions can be held face to face with the ones you love. That’s a great suggestion, but not all families are eager to do because they fear it might lead to the ruination of the one day of the damn year when we’re all together and we love it.
So what do you think? Are you with me? What if we reclaim Valentine’s Day and make it a day that transforms our relationships and shapes our futures? Will there one day be a line of Valentine’s that feature a DPOA form or an advance directive as the text?
If you want to transform Valentine’s Day, here are some resources and sources for inspiration:
Caring Conversations
The Conversation Project
Engage with Grace
Commenters, feel free to add your own favorite sources for getting the conversations started.
Also, feel free to write your versions of Valentine Greetings related to DPOA/Advance Directives, etc.
Emily Riegel, MD is a palliative care physician at the University of Kansas Medical Center, where she sees both children and adults. No one will believe her but she actually knows how to arrange flowers.
Photo Credit: Emily Riegel cc
Friday, February 13, 2015
Wednesday, February 11, 2015
by Lisa Podgurski, MD
(Patient information is fictionalized to illustrate this case.)
Case:
Discussion:
Defining the Problem
Implantable Cardioverter-Defibrillators (ICDs) have a clear role in patients with advanced heart failure whose goals of care include life-prolongation, as a mortality benefit has been shown in large-scale clinical trials. As more patients live with these devices, the psychological effects of having an ICD are being increasingly recognized. The most common forms of psychological distress in patients with ICDs are anxiety (13-38% of patients), depression (18-41%), and PTSD (20%), frequently related to fears of being shocked, whether or not the patient has ever actually been shocked. Effects on body image and on daily behaviors such as physical activities, increased difficulty of screening at airports, and interference with medical care (e.g. MRIs) have also been noted to negatively impact quality of life. Many patients struggle with changing their behavior in an effort to avoid situations they fear will increase heart rate and then lead to a shock, including limiting sexual activity. Although PTSD was previously thought of primarily in cases of combat- or abuse-related trauma, the cardinal features of the condition (vividly reliving an event that was perceived to be life-threatening, avoidance of reminders of the event, and a general state of hyper arousal, all present for greater than 1 month) are frequently seen in patients with ICDs. Predictors of PTSD in these patients include history of more than 5 shocks, younger age, female gender, low social supports, and pre-implantation psychiatric history. A recent study notes a temporal relationship between ICD shocks and subsequent development of anxiety symptoms which was not seen with anti-tachycardia pacing, demonstrating evidence for a causal relationship.
There are some unique features of PTSD in ICD patients, compared with PTSD in other settings. One is the risk of recurrent shock (ongoing trauma), which has prompted a suggestion to re-name the condition “post-ICD shock stress reaction.” Another unique aspect of post-ICD shock PTSD is the phenomenon of phantom shocks, in which the patient feels the experience of a shock without the device actually firing, as occurred in Mr. S and his friend
Strategies for Treatment
A key aspect of addressing the patient’s anxiety and
PTSD symptoms is to address the source of the anxiety.
Medical strategies for minimizing ICD shocks are essential,
including optimization of the patient’s volume status to
reduce risk of malignant arrhythmias as well as adjustments
to the device to make effective use of anti-tachycardia
pacing.
In addition, treatment efforts should include offering the patient coping support and strategies for dealing with shocks. There is solid evidence for the use of Cognitive Behavioral Therapy in this setting. Studies have shown decreased physical limitations, increased physical quality of life, and decreased anxiety. Additional coping tools include relaxation exercises (diaphragmatic breathing, meditation, progressive muscle relaxation) and distraction techniques (imagery, counting, use of a focal point). Patients should be discouraged from avoiding activities they enjoy for fear of being shocked, as this contributes to anxiety and decreased quality of life.
Patient Education
Patient education pages have been developed to help address the psychosocial concerns that develop in people with ICDs including coping strategies for dealing with trauma and stressful events, education on ICDs and sexual health, and support for partners of people living with ICDs. A very helpful one can be found free of charge at http://circ.ahajournals.org/content/127/4/e426.full.pdf. In addition to use of written educational materials, clinical management of all ICD patients should include active screening for PTSD and other forms of psychological distress, anticipatory guidance, and treatment referral.
Conclusion:
Mr. S met with the palliative care psychologist while he was hospitalized and became a frequent-user of deep breathing relaxation techniques. He also employed music as a self-treatment for his anxiety. His wife was able to participate by developing a routine of relaxing things to do in the setting of a threatened or actual shock (e.g. placing a moist towel on his forehead). He planned to connect with a therapist closer to home after discharge from the hospital. In addition to these behavioral coping strategies, he was started on low-dose clonazepam. He was gradually able to tolerate being less confined to a still position in his chair and worked his way up to walking in the hall on the ward. He did continue to experience frequent shocks until undergoing an extensive VT ablation procedure; after this he has had much more infrequent shocks (a few in the next 6 months).
References:
1) Sears SF, Hauf JD, Kirian K, Hazelton G, Conti JB. Posttraumatic stress and the implantablecardioverter-defibrillator patient: What theelectrophysiologist needs to know. Circ Arrhythm Electrophysiol 2011;4:242-250. Open Access
2) Ford J, Sears SF, Shea JB, Cahill J. Cardiology Patient Page: Coping with trauma and stressfulevents as a patient with an implantable cardioverterdefibrillator. Circulation 2013;127:e426-e430. Open Access
3) Schultz SM, Massa C, Grzbiela A, Dengler W, Wiedemanna G, Pauli P. Implantable cardioverterdefibrillator shocks are prospective predictors ofanxiety. Heart and Lung 42 (2013) 105-111.
Original Case by Lisa Podgurski, MD, Edited by Christian Sinclair, MD
University of Pittsburgh Medical Center
Pallimed Case Conference Disclaimer: This post is not intended to substitute good individualized clinical judgement or replace a physician-patient relationship. It is published as a means to illustrate important teaching points in healthcare. Patient details may have been changed by Pallimed editors to help with anonymity. Links and small edits are made for clarity and to abide by Pallimed editorial standards.
Photo credit: Implanatble cardioverter-defibrillator by Gregory Marcus, MD, MAS, FACC via Wikipedia CC BY 3.0
Wednesday, February 11, 2015
Tuesday, February 10, 2015
by John Mandrola, MD
This Wednesday Feb 11th, at 9 PM EST, I will be a guest host of the weekly Hospice and Palliative care Tweet Chat.
Dr. Christian Sinclair recently commented on my stewardship piece on theHeart.org. Christian then emailed me to ask whether I would host #HPM chat on Twitter.
I agreed because I know cardiologists could benefit from talking with hospice and palliative care pros.
The good news about medical technology is that people are living longer. That is also the challenge. Cardiologists are increasingly called on to treat the elderly and frail. We are innovators and doers, but human beings are not immortal.
Yet, I am sure of this: When life-prolonging measures are no longer effective or desired by the patient, the opportunity to deliver care, beautiful care, remains. It is just that most doctors have little (to no) training in helping patients transition to care with different goals. Too often, we fail to see that there is always something else to do.
Here are the three topics we will start with:
T1: Frailty is an important predictor of outcomes, but how do we get specialists to see it, talk about it, and use it in decision making? (re: the coming revolution in percutaneous valve surgery.)
T2: ICD generator-change surgery in the elderly: How do we best present the different paths? It seems a simple question but it is not because it means discussing competing causes of death. (Please see Drs Drye case report in Circulation Outcomes.)
T3: What is the role of palliative care in advanced heart failure? Could early palliative care be as useful in advanced heart disease as it is in advanced lung cancer?
What: #hpm chat on Twitter
When: Wed 2/112015 - 9p ET/ 6p PT
Host: John Mandrola Follow @drjohnm
Facebook Event Listing: https://www.facebook.com/events/1013090115371076/
If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using nurph.com, for ease of following.
We will be posting the transcript and analytics here after the chat takes place. Chat Transcript and Chat Analytics courtesy of @Symplur
John Mandrola, MD is a cardiac electrophysiologist practicing in Louisville KY. I am also a husband to a palliative care doctor, a father, a bike racer, and a regular columnist at theHeart.org | Medscape
Tuesday, February 10, 2015
Monday, February 9, 2015
The producers at FRONTLINE were kind enough to reach out to Pallimed to preview the "Being Mortal" episode being aired on local PBS stations starting this Tuesday Feb 10, 2015 (also available online on Tuesday). The episode is based on the recent book of the same name by Dr. Atul Gawande that many of us are probably already familiar with. (Pallimed review here)
Dr. Gawande does a fine job of sharing his realization that he was missing something in the way he took care of his patients. One of his biggest barriers in providing good care for seriously ill patients is the very common situation when patients want to try everything until it gets to be the point where the treatments are no longer likely to help. Then they want to emphasize quality of life, frequently wishing to be at home rather than the hospital at the very end.
The struggle the doctors face in this program is very real and very common. Most of us went into medicine in order to try to fix things or at least to make them better. I personally find a lot of scope for making things better in incurable diseases (and a lot of satisfaction in doing so), but that is foreign to many physicians. The death of your patient is a failure. It takes a fair degree of self-awareness to adjust that outlook and broaden your definition of success.
The place where this video really shines is in the portrayal of patients and families as they go through this process. That starts with Dr. Gawande’s own insight into the illness of his father and the effect that it had on him and on his mother. He recognizes this as a catalyst for trying to do a better job as a physician. I’m not sure he really recognizes the importance of his being his father’s son rather than his father’s doctor, but this change in perspective shows through in the episode.As a kumbaya sort of doctor, I’m neither surprised nor shamed to admit that I teared up during some of the patient/family interviews. It would take a jaded person not to be somewhat affected. It’s okay if you want to claim there was a persistent speck of dust in your eye.
I struggled quite a bit writing this review. In retrospect, I think that is because of the lens through which I originally viewed the video. Doctor-patient communication and informed shared decision making is one of the most important elements of medicine to me. The choices I’ve made in my training and career have emphasized this. As I was watching the video, I was thinking: “You are not doing a very good job here. I could do much better.” Actually, what I was thinking was a lot less polite than that and was also liberally laced with profanity. On more solemn reflection, that is a completely unfair way to view this video. “I could do much better”. True, but trivial. I’m a specialist in this area. If I couldn’t do better than most specialists in entirely different areas, then I’ve probably made some poor career choices along the way. Therefore, before writing this review, I watched the video two more times, once with an emphasis on watching the struggles of the doctors and then again with an emphasis on the experiences of the patients and their families.
I’ve essentially finished the review proper now. This was a worthwhile video and I recommend watching it. You can stop reading now.
Still reading? Okay. Now it’s time to move on to the cranky-specialist-rant portion. And this rant is not necessarily about the video itself, but more about how it shows our medical system currently works. First the disclaimers. This program is less than an hour long, and therefore cannot be comprehensive. Dr. Gawande was able to include considerably more nuance in his book, Being Mortal. That book is excellent. It is well worth reading by physicians and non-physicians alike.
A couple of caveats when taking a more critical eye towards the conversations shown; it is important to understand we do not see the full interactions between physicians and patients/families. The clips shown may not be representative of the whole.In addition, most of these physicians were not palliative specialists. They were specialists in other areas of medicine. I shudder to think of what scathing commentary I might receive if they got to view my patient interactions that touched on their specialty areas.
It is important that people do not perceive this program as a good guide for how to discuss serious illness. It shows the very infancy of the move to improving communication. It is like the move from rotating tourniquets to loop diuretics in CHF. We’ve still got to get to ACE-I/ARB, beta blockade, spironolactone, AICDs (and maybe digoxin, dobutamine, ASA).
There are typical errors that physicians make, and most of these physicians did not avoid those errors. We are good at giving pathophysiology lectures. It’s what we’ve learned to do and what we’ve been rewarded for doing during our training. When the situation gets difficult for us, it is very natural to revert back to that paradigm. There are patients for whom such an emphasis is useful, but these are in the minority. The better time for talking about the medical specifics is usually after understanding has been ensured, goals have been discussed, and concerns addressed. If your patient is worried about whether or not she is going to make it to her daughter’s graduation, you aren’t doing her any favors by leading off talking about her liver function tests.
It is common to think of the decision regarding curative intent vs. palliative intent treatments as a dichotomous one. Unfortunately, the Medicare Hospice Benefit in the US strongly emphasizes this approach. Multiple times during the video, the concept of “There will come a time when we need to…” came up. There is a better way to approach this. There shouldn’t be a sharp line here. There should be a constant evaluation of the patient’s understanding of the disease and of their goals. It is only in context of a patient’s goals that you can truly recommend treatment options that are concordant. A decision will often have to be made in terms of tradeoffs. Which should you preference: quantity of life or quality of life? Sometimes interventions can help with both. Those are the easier ones. When a decision has to be made to preference one rather than the other, the patient’s input is critical. That process should begin much sooner than it usually does.I hope you watch it Tuesday night and share some feedback on what you gathered from the show.
Bruce Scott, MD is an academic physician in Ohio, fellowship-trained and board certified in Geriatrics and in Hospice and Palliative Medicine. His hobbies include boardgaming, cooking, and pedantry. You can find him on Twitter - @skipbidder
Monday, February 9, 2015
So let’s say you can’t get any of your friends or family to get into watching Being Mortal with you on Tuesday night. No worries, we have you covered! With Facebook, Twitter and Pallimed you can find other people who want to talk about the show (and the book). Probably people a lot like you.
First, find it either online at PBS FRONTLINE (starting Tuesday) or check your local PBS listings for the premiere Tuesday night.
Second, if you are interested in being part of the conversation as you watch the show or reflect on it later, you can choose from one of the following ways:
- Comment on the review post here on Pallimed by Bruce Scott. If you have never commented before here is your chance. The comment systems (DISQUS) is quite simple and you can even reply straight from your email app.
- If you are already on Twitter, use the hashtag #BeingMortal to share your insights and opinions and find other people talking about it. (PS Great way to find new people to follow and gain new followers too). At 10p ET on Tuesday, you may also find many hospice and palliative care professionals using the hashtag #hpm in addition to Being Mortal. Using a chat website (like this one) will help you follow the conversations better. If you are confused Tuesday night, just tweet at me @ctsinclair.
- Go to the Pallimed Facebook Event at 10pm ET on Tuesday, where nearly 100 people have already RSVP’d. We should be getting a good conversation going there as well.
Hope to see you advocating and educating tomorrow night! #BeingMortal Tweets
Photo Credit: Courtesy of Being Mortal by PBS FRONTLINE
Thursday, February 5, 2015
I admire those who've signed on for the GeriPal Thickened Liquid Challenge. I’m thinking of using my video to issue a Failed Nausea Management Challenge.
I’ve encountered the detestable goop through turns in neuroscience and hospice nursing, and have never been a fan - most probably because of some unwise decisions involving Jell-O shots at ‘Manequins’ on Disney’s old Pleasure Island.
My intense dislike is also based on the expressions of everybody who tries the stuff. You all look just like I felt years ago, when I first caught my reflection on a shiny surface in the “dirty” utility room, while standing at the hopper with a nasty bedpan.
Hopefully we’re all a bit queasy now, so let’s consider what to address before thickened liquids come up again - pun intended.
I don’t provide much care as a hospice case manager, compared to other settings. Rather, I help establish and operate a fluid network of nursing schools. Our learners don’t really enroll voluntarily, and they must learn new concepts and apply new skills during the most difficult times of their lives. Much of the curriculum is clinical, so the techniques we teach have to be based on sound reasoning, safe, and effective.
Some caregivers are so determined to insure their charge continues eating or drinking that their interventions increase the risk of aspiration. Food and fluids are matters rife with emotion, bound to many things - culture, caring, control, peaceful acceptance. Safe swallowing can often be the least-threatening way to start a discussion, or to redirect care that’s unsafe or inconsistent with patient/family goals.
Here’s the simple approach to dysphagia screening and safe swallowing that I've learned. Family and other caregivers need this information to provide safe, effective, and compassionate care. Hospice volunteers and all other members of the IDG should also be prepared, because you never know who’s going to be standing there when somebody thinks it’s time for a drink. In complex cases, it is important to enlist the aid of speech therapy.
*****
Swallowing is a complicated task. It can be tiring for someone who is very ill or debilitated. There are three risks associated with impaired swallowing (dysphagia):
1. Choking - the airway is completely obstructed and the person can't breath. This is a medical emergency requiring the Heimlich maneuver if the person is conscious, CPR if they’re not.
2. Acute aspiration - the sudden experience of food or liquid bypassing the epiglottis and irritating the upper airway. It provokes the cough reflex, which may not be strong enough to fully protect against distress.
3. Chronic microaspiration - the slow infiltration of small quantities of oral secretions and other substances into the airway. Chronic low-intensity coughs can be under-appreciated, or the process may not provoke a cough and go unnoticed. People who are weak and debilitated, have neurological disorders, altered mental status, or advanced disease are at risk for chronic microaspiration, which in turn can lead to pneumonia.
*****
Use these 3 simple steps to identify potential dysphagia and hopefully lower the risk of aspiration (and as always talk with your clinicians, use common sense, and don’t mistake this for personalized medical advice):
Step 1. Is the person awake, alert, and interactive? Swallowing is a conscious act with some involuntary components. We must be alert to initiate a safe swallow. Look for eye contact, appropriate verbal responses, and the ability to follow simple commands.
If the answer is 'no,' do not proceed.
If you're satisfied, based on your knowledge of their baseline, go to step 2.
Step 2. Can they sit upright? An upright posture is essential for safe swallowing. ‘Upright’ means sitting in a straight back chair or wheelchair, at the edge of the bed with feet on the floor, or in bed with the head elevated more than 60 degrees.
If the answer is 'no,' do not proceed.
If 'yes,' go to step 3.
Step 3. Give a SMALL amount of thin liquid (water, coffee, juice), or thick food (pudding, yogurt, ice cream) as a trial. SMALL = about 1/3 to 1/2 ounce (10-15cc) thin liquid. Use a 30cc medicine cup. Do not use straws or large cups - they make it difficult to control the amount and speed of a substance entering the mouth. If feeding pudding, yogurt, or ice cream, just use the front of a teaspoon.
Does the food/liquid sit in the mouth, or between the cheek and gums, instead of being promptly swallowed? An inability to promptly move food or liquid from the front of the mouth back to the oropharynx is a sign of dysphagia called ‘pocketing.’ The need for anything more than a single simple cue to swallow the full amount is also considered ‘pocketing.’
If 'yes,' remove the material from the mouth and do not proceed.
If swallowed, does the person cough, or is the quality of their speech altered - thick, hoarse, gurgling, gagging, etc.?
If 'yes,' do not proceed. Provoking the cough or gag reflex, or an altered voice, are indications of acute or near-aspiration.
If 'no,' repeat the trial amount (10-15cc). Assess the person’s response after each attempt. Continue or stop based on the response. Feed slowly, and be ready to stop whenever indicated, as previously described.
Important note: Always provide frequent and thorough oral care regardless of swallowing status.
Jerry Soucy, RN, CHPN (jerry.soucy- at- gmail.com) has worked with patients and families facing end of life in critical care, hemodialysis, and hospice. He developed and presents “So you’re going to die…” an adult ed course on advance care planning and end of life inspired by an episode of The Simpson’s. He hopes to grow a 500-pound pumpkin this year.
Photo Credit: lymang via Compfight cc
Thursday, February 5, 2015
Wednesday, February 4, 2015
Wow, did January move fast or is it just us?
Here is a recap of all of our posts from January 2015. We know there are some you may have already bookmarked, but forgot to read, or maybe you liked it so much you want to share it again.
We hope to see a lot of you in Philadelphia for the Pallimed/GeriPal party on Thursday Feb 26th! Who knows, maybe we'll bring the thickener.
Make sure to follow, engage, like and comment with us on Facebook, Twitter, Google+, Pinterest, Tumblr and LinkedIN. And we always appreciate it when you recommend us to your peers.
Advocacy
- First #hpm chart of 2015: reflections and a way forward by Meredith MacMartin
- Sharing your genius in hospice and palliative care by Allie Shukraft
- Palliative Care Everywhere! by Cory Ingram
- Using validation to prevent crazy making in caregivers by Debra Parker Oliver and Jessica Oliver Tappana
- Surf Culture: Paddling Out by Holly Yang
- Hospice and palliative care: the year in review 2014 by Christian Sinclair
- Results of 2014 Story of the Year poll by Christian Sinclair
Narrative/Opinion
- Benign Prostatic Hypertrophy as a Hospice Diagnosis by Julie Childers
- Stuart Scott and fighting metaphors in medicine by Christian Sinclair
- Why the thickened liquid challenge matters by Christian Sinclair
- National Drug Facts Week by Mary Lynn McPherson
- Palliative care and heart failure in primary care by Katherine Sleeman and Tara Whitburn
Holly Yang, Kristina Newport, Steve Smith, Jerry Soucy, Emily Riegel, Alile Shukraft, Jennie Cooper, Karen Kaplan, Clay Anderson, Judy Thomas, Jessica Tappana, Drew Rosielle, Debbie Oliver, Simcha Shapiro, Andrew Kamell, Ruth Hill, Tina K, Julie Susann, Judy from Upstate, Meredith MacMartin, and a few anonymous people.
Highlighted Comment for January 2015
Karen Kaplan's comment on Using validation to prevent crazy making in caregivers by Debra Parker Oliver, MSW, PhD and Jessica Oliver Tappana, MSW. - January 9, 2015
You so skillfully remind all healthcare professionals to validate feelings and not to forget family systems. What is of interest is how often we need such reminders, which suggests to me that we can have our own issues for resisting validation, which is distinct from not knowing about it or forgetting about it. Validation means we have to acknowledge our helplessness: we can't cure the disease, etc. Validation means we have to face our own anxieties about mortality and pain. Even chaplains, whose training is almost entirely about listening, reflecting and validation in general, often retreat into resistance. Thus we have to keep those reminders coming, and also try to become self-aware of the sources of resistance.
Help wanted
If you are interested in writing for Pallimed please contact us via any of the social media platforms or email editor@pallimed.org. If you want to help we have something you could do! Like write this simple monthly review post (really this would be really great to hand off)! Or help run one of our social media accounts (especially with Pinterest and Tumblr) - we do on the job training!
Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas Medical Center and editor of Pallimed. When not advocating for health care professionals to use social media you can find him playing board games.
Image Credit: "January 2015 Pallimed Monthly Review" Christian Sinclair for Pallimed, licensed via CC BY NC-SA 4.0
Wednesday, February 4, 2015
Monday, February 2, 2015
by Holly Yang, MD
I was issued the Thickened Liquid Challenge by Dr. Christian Sinclair. I had resigned myself to the knowledge that I would not escape it the minute I saw it on GeriPal. I somehow had avoided the ice bucket version, so I figured it was my turn. On the upside, it gave me a chance to test a hypothesis that I've been considering for a while.
So, I have been espousing this theory that people are texture people or taste people. Some people can't eat the tops of asparagus because the texture weirds them out. Those people probably can't eat raw oysters, and definitely won't like most things I drank in the thickened liquid challenge. So, I decided to film a mini-documentary of my not-at-all-scientific test of this theory, one minute for each hour.
So, if you watched it, you were able to see the results of my experiment, and you know the final outcome. Here's a quick summary slide.
I also wanted to pass on a few things I learned along the way.
1) There are naturally thicker beverages I enjoy that I drink now. God forbid I have trouble with dysphagia in the future, I will likely stick to those things. Why not recommend some of these things to our patients?
2) Some things that I thought would be awful, were actually okay, not great, but okay. (Well, for me anyway.)
3) Some things that I thought would be okay, were really, really not.
4) Don't give your spouse the "not now" look when he tries to make filming recommendations, or he may keep his mouth shut about taking it easy with the thickener too.
5) Patience is a virtue, and may help you avoid unpleasant things. Give the thickener time or everything becomes pudding thick either in the glass or in your stomach. (See #4)
6) Thickened liquids can make you feel really full. (See #5)
7) Thickened liquids may be able to hydrate you, as perplexing as that seems while you are "drinking" them, but they make your mouth really dry. Good oral care is going to be necessary for your patients.
8) If you drink a frozen frappucino too quickly in order to keep it "honey thick" consistency, it will most definitely give you an ice-cream headache to replace your caffeine-withdrawal headache.
9) Bananas = #thickenedliquidhack
10) Carbonated beverages get crazy bubbly with thickener added. Not Mentos bubbly, but more like root beer float bubbly.
11) We should think twice before asking patients to do things we aren't willing to do ourselves. Certainly not things that we make "yuck faces" at and giggle about. Not cool, Robert Frost!
12) Add ice cubes AFTER thickener when drinking scotch.
Unanswered questions:
1) How do you brush your teeth on a thickened liquid restriction?
2) Does Fitbit have a calorie count for thickener?
3) Exactly when does a liquid become a solid?
Thanks for watching, and thanks for reading.
If you haven't been nominated for the challenge, nominate yourself, and then a few of your best friends, frienemies, or that person at work that bugs you. Or... hope and pray that no one calls you out.
Seriously though, I think we should know what we are asking our patients and families to do, put ourselves at their place at the table instead of labeling them "noncompliant," work on shared decision making with real information (see GeriPal post), and help them incorporate what ever the decision is in the tastiest way possible with our nutrition and speech and language pathology colleagues as partners (See posts here and here).
Cheers!
Holly Yang is a Hospice and Palliative Medicine doc practicing at Scripps Health in San Diego, with a particular love for medical education, especially the communication, international, and moving the field forward bits. She is also fascinated by the intersections of #hpm, humanities, and spirituality. Holly surfs whenever she can, and has a bit of an obsession with Kansas City barbecue.
Monday, February 2, 2015
Sunday, February 1, 2015
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As we care for patients with serious illness, we frequently encounter depressed mood. Multiple studies have shown depression independently contributes to morbidity and mortality, and yet most of us do not systematically screen for it. This is again illustrated in Lloyd-Williams’ et. al recent study of 629 patients with advanced cancer attending palliative care day centers in England. Patients in this study identified as moderately to severely depressed on the PHQ-9 died three weeks sooner than those with no or only mild depression. A similar result was identified in patients who reported consideration of self-harm. Notably, in the majority of cases, involved health care providers did not know of their patient’s self-harm thoughts.
I don’t think this is unique to palliative care centers in England. The complexity of differentiating depression from symptoms of serious illness interferes with diagnosis. (See Fast Fact #7 - Depression in Advanced Cancer ). We, as a field, have not yet decided upon a simple tool that can be used to screen for depression or standardization of when it should be completed. (Although some helpful suggestions are found on Fast Fact 146 - Screening for Depression in Palliative Care ). Also, it can be a helpless feeling to identify a depressed patient when their treatment options for the depression may be very limited due to short prognosis and multiple, irreversible, contributing factors.
So while there is no simple answer to this challenge, I tend to think that we can do better with our current tools. Any effort is better than no effort, right?
In our community cancer institute, we recently began standard administration of the NCCN Distress Thermometer with all new patients. Any patients who had a score of 4 or greater were referred to appropriate support services. Like the Lloyd-Williams’ study, we uncovered distress which the health care team had not previously identified, resulting in a 47% increase in referrals to support services, the majority of which were related to “emotional problems”. While studies to validate the NCCN Distress Thermometer as a depression screening tool have had conflicting results, I can’t help but think that the 745 more people who were referred for increased assessment and assistance would not care about sensitivity and specificity. I can’t prove it yet, but maybe some of them had improvement in their mood and maybe they even lived a day or two longer as a result. I’m just glad that there is a tool out there that is palatable to oncology practices so they are willing to use it, in a standardized way.
Our next steps are to identify what to do with the information we find. What happens when we do refer patients? Do depressed patients live longer if they get treatment? With estimates of 15-50% of palliative care patients experiencing depression, we should figure this out.
But first, we have to ask them about it.
Kristina Newport MD (@kbnewport) practices Hospice and Palliative Medicine in Lancaster, PA where she also spends time running after her children, 4 and 6.
Lloyd-Williams M, Payne S, Reeve J, Dona RK (2014). Thoughts of self-harm and depression as prognostic factors in palliative care patients. Journal of Affective Disorders, 166, 324-9 PMID: 25012448
Image credit: "Depression Ahead" by Christian Sinclair for Pallimed, Photo Credit: "Sad Eggs" by Christian Sinclair
Sunday, February 1, 2015
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