Mastodon 15_02 ~ Pallimed

Saturday, February 28, 2015

AAHPM Assembly State of the Science 2015

As David Currow said when he received his Excellence in Research award, hospice and palliative medicine researchers need to meticulously measure toxicity in addition to benefits of palliative interventions. How do you think the State of the Science studies did with this goal? What do you think about the conclusions of each of the studies? Any changes in your practice? Thanks to the presenters Jay Horton, Kimberly Johnson,Nick Dionne-Odom, and Cardinale Smith for reviewing and presenting. Always a fun presentation.

Saturday, February 28, 2015 by Lyle Fettig ·

Wednesday, February 25, 2015

Refractory breathlessness: the next #hpmJC Journal Club

By Katherine Sleeman

On Thursday 26th February from 9-10pm UK time (4pm New York, 8am 27th Sydney) we will be holding the monthly Twitter Journal Club for hospice and palliative medicine: #hpmjc. The aim of the journal club is to provide an informal multidisciplinary forum for discussion of latest research findings, and we hope you will join us. You can find some more information about the journal club here.

The paper for discussion this month is 'An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial’. The paper was published in December 2014 in The Lancet Respiratory Medicine, and is open access.
This month’s journal club will be led by Katherine Sleeman (@kesleeman), Clinical Lecturer at the Cicely Saunders Institute.

Why this paper?

Breathlessness is a common and distressing symptom in advanced diseases such as lung cancer, chronic obstructive pulmonary disease (COPD) and heart failure, and is often difficult to manage.

This paper reports the results of a randomised controlled trial of an early integrated breathlessness support service for patients with refractory breathlessness (breathlessness that persists once treatment of the underlying disease is optimised). The breathlessness support service was a multi-professional integrated service combining respiratory, physiotherapy, occupational therapy, and palliative care.

What did they find?

105 patients were randomly assigned over 2 years to receive either the breathlessness support service or usual care. The primary outcome was breathlessness mastery at 6 weeks after randomisation. The authors found that breathlessness mastery improved in the intervention group compared with the control group. Intriguingly, they also found that survival at 6 months was better in the breathlessness support service group than the control group.

Questions for discussion:

In your experience, is unrelieved breathlessness is a significant clinical problem?

What are the advantages of a fast track trial in palliative care?

What do you think of the primary endpoint of ‘breathlessness mastery’?

Are you surprised by the improved survival in the intervention arm? What might be the mechanism?

Are randomised controlled trials of palliative care that have patient survival as the primary endpoint needed?

We look forward to discussing this on 26 February, and hope that you can join us. Just follow @hpmjc and use #hpmJC on Twitter.

Wednesday, February 25, 2015 by Christian Sinclair ·

Tweetchat 2/25 AAHPM HPNA meeting #hpm15

By Sue Wintz

As #hpm15 begins, our #hpmchat tonight will focus on what is coming out of the conference so far. What tweets have you found to be the key messages so far?  Which pre-con tweets today interested you the most and why? Who and what will you be following as the week goes on?  Join in on the chat and share your anticipation in participating in #hpm15 via Twitter.  Your cha host this week is Sue Wintz, a board certified chaplain and national expert in spirituality in palliative care.

Questions for Chat:
Q1:  What key messages have you heard so far from #hpm15? 
Q2:  Which #hpm15 pre-cons did you follow today and why?
Q3:  Who and what will you be following as the week goes on at #hpm15

by Pallimed Editor ·

Tuesday, February 24, 2015

Hard conversations and being mortal

While watching a movie recently, (“Still Mine”) a conversation occurs with a woman in her mid-eighties who asks her spouse, “Do you think much about dying?” He responds, “Probably not as much as I should”. She says, “When I was young, I looked at old people…and thought if you live long enough, you’ll probably have time to figure out dying. But I’m no closer now to the great mystery than when I was 10”. Her spouse answers, “You see that as a problem, do you?”, and she quips, “We’ll see soon enough”.

Ah, the problem I am constantly faced with! Whether aged or not, so many near-dying people are still waiting to make a plan. Still no closer now, in their eighties, to recognizing that the deep mystery of death is just around the corner, and they haven’t really talked about what they want, as they are dying- the where, what, how of it is not even considered. Where, if you ask most people, is in their home, what and how of it is usually wanting a quick and painless death, avoiding suffering as much as possible, with the ability to say goodbye, and I love you to family. Many have not completed an advanced directive or a POLST, and have hardly scratched the surface of a real conversation.

We are deluged with articles and reports about having “the conversation”, and the recent "Being Mortal" Frontline special highlighted, again, what those of us working in hospice and palliative care are experiencing almost daily. The conversations are difficult. They are fraught with emotions, awaiting the abyss of grief when patients and families realize truths of the disease progression. The spouse hears that it is time for hospice, and is overcome. Not a comfortable moment for the doctor, but she is able to quietly sit while the harsh truth sinks in. Yes, the patient has been dying, incrementally, but now in earnest. Time is of the essence for the patient and family. And the medical team must be human, not cloaked in the protection of white coats and emotional detachment. It is not the time to whitewash the conversation in vagueness or unrealistic expectations: honesty with compassion is needed. “When words are both true and kind, they can change our world” (Buddha).

We all were born with the disease of mortality. And yes, “there’s no natural moment to have these conversations except when a crisis comes, and that’s too late”(Gawande). But for a grandfather who is reaching the end of his life, it can be a defining moment to talk to his young grandson; that just as the animals in the farm die, the grass and trees in the field die, so in the web of life, we all are dying, and he will be dead, soon, too.

There are so many moments to grasp, if we are conscious of them, to sit quietly and share the experience of being mortal.

Amy Getter is a palliative care and hospice nurse who cares for patients with life limiting illnesses. She lives on the Oregon coast and is passionate about her family, being surrounded by natural beauty, and telling stories.

Tuesday, February 24, 2015 by Pallimed Editor ·

Social media and the AAHPM/HPNA Annual Assembly

by Christian Sinclair, MD

We have come a long way from 2009 when we first had a score of people live tweeting the Annual Assembly.  Whether you are here in Philadelphia or back home keeping the service running while your peers are here, it is easier than ever to get interact with all the great people who care about our field.

If you are looking for just the highlights, look no further than Twitter.  You do not even need to have a Twitter account to make good use of the hashtag #hpm15 (but it sure helps!).  Just go to and enter #hpm15 in the search box and you will find the top tweets, pictures and info about the meeting. If you ever feel you just don't get Twitter, go read Staci Mandrola's post from Monday about how she finally gets it, after 5 years of reluctance. This week is a great opportunity to see what the potential of Twitter as an organizing tool for disseminating goo information.  And after the conference you can join us for #hpm chat on Wednesday nights!

This year we are trying an experiment which may appeal to those of you who are more Facebook friendly than Twitter terrific.  If you go to the Pallimed Facebook page (which is a really fun place to be BTW), and click on Events you will find the AAHPM/HPNA Annual Assembly listed.  Here you can post about a session you went to and in the comments below that post, you can start conversations with people who went to that session, or who are interested in the topic.  If it becomes popular, we will take what we learn and share it with AAHPM and HPNA and think about doing this in the future officially.

Now some of you may be thinking this social media stuff is for the birds, yet you may be feverishly writing notes to bring back to your colleagues back home.  If you do a write-up of the big lessons you learned, consider sharing it more broadly. We would love to see what you wrote and we may publish the best ones we see here on Pallimed!

And lastly, if you are in Philly, please consider coming to the Annual Pallimed/Geripal party Thursday night and meet some of the writers of the websites.  It has always been a great night. If you see any of us during the Assembly, please come up and say hello and get your Pallimed sticker for your badge.

Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas, editor of Pallimed and a fan of Philly cheese steaks and hoagies.

by Christian Sinclair ·

Monday, February 23, 2015

Why I finally signed up for Twitter - A physician's story

by Staci Mandrola, MD

I met Joe Rotella, the newly announced CMO of the American Academy of Hospice and Palliative Medicine, in the grocery store yesterday. We were both browsing the aisles, him for some crackers, me for some chicken broth. We stopped for a chat. He mentioned he just joined Twitter (@JRotellaAAHPM) and he’s following my husband John (@drjohnm) and me (@drstacim).

We talked about how Twitter is a whole new world for newbie 50-year-olds. How hard it is to type a URL into that little box and make it short rather than embarrassingly long. How no one cares what we think. What is a TweetDeck and how do I get one? What’s the difference between RT and MT?

John has been on Twitter for almost five years. He started with a postage stamp size following of less than one hundred people. He now has over 10,000 people that resonate with his message of common sense care for atrial fibrillation that includes a huge dose of Vitamin L (lifestyle), in addition to pharmacologic therapy and catheter ablation.

I’ve been on Twitter for 2 weeks and have my own postage stamp following. I have no illusions that the stamp will morph into a real country. It is a second full time job for John and he loves it. What I do hope is that it will lead to more virtual grocery store chats with really cool people who love palliative care.

This is a small sample of the people I’ve met in two weeks! Christian Sinclair (@ctsinclair) who is a tireless social media advocate for palliative care and editor of Pallimed blog. Nora Zamichow (@zamichow) who wrote about how her husband died of brain cancer and never heard the words “You are dying”. Lizzy Miles (@LizzyMiles_MSW) who taught me 10 things I need to do when I get diagnosed with a serious illness. Lyle Fettig (@lfettig) who taught me to examine my own feelings of blame when caring for a person with a devastating and unfair diagnosis. Laurie Becklund (@exlatimes) who died of metastatic breast cancer on February 8th and says:
Promise me, I told my friends and family, that you'll never say that I died after “fighting a courageous battle with breast cancer.” This tired, trite line dishonors the dead and the dying by suggesting that we, the victims, are responsible for our deaths or that the fight we were in was ever fair.
I could go on about all the good stuff on Twitter. Next week is our annual American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association meeting in Philadelphia. There will be thousands of the best, brightest, most committed, motivated, fearless palliative care people in the world at that meeting. And you are one of them! Join Twitter and join us at #HPM15 to get the word out about giving great care to people with serious illness.

You never know who you might chat with in the grocery store! Maybe the new CMO of AAHPM!

Staci Mandrola is a wife, mother, grandmother and palliative medicine physician who practices in Louisville, KY. Her husband John writes at Dr John M.

Monday, February 23, 2015 by Pallimed Editor ·

Friday, February 20, 2015

10 practical things to do when diagnosed with a serious illness

by Lizzy Miles

1.     Obtain an Advance Medical Directive

An advance medical directive is a legal document that indicates to medical professionals who you have designated to make decisions on your behalf, once you are no longer able to communicate your own preferences. 

Chose the person in your life who you feel would best be able to represent your wishes.  Equally important in obtaining the written documentation is to verbally discuss your preferences and philosophies with the person you are designating to make your future health care decisions. 

2.     Obtain a Financial Power of Attorney

A financial power of attorney is a legal document that enables another individual to make financial transactions on your behalf.  Some families choose to have the same person handle both the health care and the financial powers of attorney, while others choose to designate different individuals.

3.     Sign or Review Your Living Will

The concept of a living will is to put your medical treatment preferences in writing.  In the United States, there are different formats of this document with varying levels of detail. 

It is a misconception that a living will is only for people who want less treatment.  The living will document also allows individuals to designate when they do want treatment.

Even if you have living will already in place, it is helpful to review it.  Research has shown that sometimes individuals change their minds from their original choices they made at a younger age.

4.     Create or Review Your Existing Last Will and Testament

The last will and testament is a legal document that designates what you want done with your assets after you die.  Even if you do not feel you have money to pass on, everything you own is considered to be an asset.  Without a will, your assets will be divided up based upon the laws where you live.

A will also supports your loved ones by clearly designating who gets what.  Without a will, if there are multiple loved ones who have an interest in the same items, family tensions can rise.

5.     Review Your Health Insurance Policy

Many health insurance policies have specific sections for issues related to terminal illnesses.  Not all procedures that are ordered by a doctor are covered by insurance.  It is better to ask questions in advance regarding coverage rather than accumulating medical debt that was unexpected.

Another reason you will want to inform yourself of your benefits is so that you can maximize the use of your coverage.  You may be covered for hospice care.  Additionally, mental health coverage, for example, may come in handy if you are having difficulty coping with your prognosis and would like to receive counseling.

6.     Organize Your Electronic Files

Now is the time to organize and document your financial, legal, and personal electronic life for your loved ones.  Keep a spreadsheet of your web addresses, logins and passwords.  Put the spreadsheet where it can be easily found, or give it to a trusted loved one.

7.     Organize Important Papers

Everyone has their own personal organizational system.  Try to compile, consolidate and label important financial, legal, and personal items so that your loved ones will be able to find them.

8.     Teach Others Your Role

In every household, each person has a role that they play within the household.  If you still share a household with others and have a role within that household, it may be time to pass the baton. 

As you receive treatment for your illness, you will may have less energy to do task-related items.  Rather than continuing to try to do everything you used to do, spend the time teaching your loved ones what only you know.

9.     Choose a Guardian

If you are a single parent with minor children, you will want to designate who you would prefer to raise your children.  This will save your loved ones time and money in dealing with the court system to determine custody after you die.

10.  Plan Your Funeral

This may seem morbid, but one of the best favors you can do for your loved ones is to tell them what you would want them to do for your funeral.  Do you want to be buried or cremated, have your body donated to science, or something else?  While this is not any easy discussion to start, it may provide a sense of comfort for your loved ones if you start the conversation. 

Without this conversation, loved ones are forced to make funeral decision in the midst of their grief right after you die.  The emotions of the situation could lead them to spend more money than you would want.

Lizzy Miles, MA, MSW is a hospice social worker in Columbus, Ohio best known for bringing the Death Cafe concept to the United States. You can follow her on Twitter here.

Image credit: "PLAN AHEAd" by Christian Sinclair for Palilmed, may use with attribtuion

Friday, February 20, 2015 by Lizzy Miles ·

Wednesday, February 18, 2015

There is no way I’m taking that %*@$ morphine!

by Kristina Newport, MD

We’ve all heard the multiple reasons why folks are not interested in using opioids for their symptoms…

“They gave my sister morphine and she died the next day”
“He associates that medicine with the war”
“My neighbor’s cousin’s brother was addicted to that stuff”

Lately I have been struck by, not only patient specific stories, but local and national stories about opioids that lead to further stigmatization.  One that really stood out recently was a story about a prisoner who  survived for 2 hours after initiation of the lethal injection procedure.  Of course, this raises issues regarding the death penalty etc., but what I’d like to point out is that the drugs utilized drugs were midazolam and hydromorphone.  The exact same medications that I ordered this morning for a patient in our hospice unit for refractory symptoms. I cringed when I heard the broadcaster name drugs that have so many beneficial uses, knowing that some of our future patients will hear this story and be jaded by it.

Locally and nationally, opioid dependence is in the news regularly, declaring prescription opioid abuse at an all time high, with frequency of overdose deaths tripling in the past 25 years.

Our anecdotal patient stories are supported by numerous published studies revealing patients’ main concerns of:

  • fear of tolerance/addiction
  • perceived hastening of death
  • impairment of cognitive functioning  
So, when we introduce the idea of using opioids to control symptoms, can we blame patients and families for balking?  Here are some lines that I would NOT recommend:

  • “I am going prescribe the same drugs that were used to intentionally kill someone in Arizona,  but I’m definitely not trying to kill your loved one”
  • “2.1 million other people are addicted to this medication, but don’t worry about that at all… you’ll die before that becomes a problem.”
As in many areas of our work, listening to patient and family concerns is key to creating an appropriate plan of care when it comes to opioid use.  In Shinjo et al’s  paper in January’s JPSM, more than 90% of bereaved families whose relatives received opioids reported a preference to receive opioids for cancer pain in the future.  This implies that when people witness the safe use and benefits of the medication, acceptance increases.  We, as providers, also understand the value of opioids, both from a clinical perspective and anecdotally.  We recommend these interventions to those who are suffering because we know that their lives can be better.

We do need to keep in mind, however, that our reasoning does not always speak to what is most important to our patients.   Sometimes the above issues are not just passing thoughts, but strongly held beliefs.  It is our duty to understand these beliefs, just as we need to understand beliefs about other treatments/end of life preferences.  And in some cases, it’s best not to use opioids. While we profess that our goal is to meet the person where they are, we are sometimes as guilty as other specialties- offering the tools that we know and love, even if it is not what the patient wants for him or herself.

So when we hear a line like “There’s no way that I’m taking that evil medicine”, it’s important to pause and ask,  Why?

Kristina Newport MD (@kbnewport) practices Hospice and Palliative Medicine in Lancaster, PA where she also spends time running after her children, 4 and 6.

For more reflections related to this topic, check out the following previous Pallimed posts:

Photo Credits:
Morphine Roche, leaflet cover, 1937 by Atelier Levitt-Him
"MorphineAdvertisement1900 - no watermark" by Venturist. Licensed under PD-US via Wikipedia.

Wednesday, February 18, 2015 by K Newport ·

Tuesday, February 17, 2015

Effective prescription of opioids to alleviate cancer related pain

by Akhila Reddy, MD
It is estimated that up to 90% of advanced cancer patients will experience pain and will require opioids during the course of their illness1. Although opioids can effectively treat cancer pain, there are still some challenges associated with their use.

One of the challenges is recognizing and treating opioid induced neurotoxicity (OIN). Timely detection and treatment of OIN will prevent unnecessary opioid dose escalation and consequent adverse effects which may include delirium, myoclonus, excessive sedation, hyperalgesia, and even death. The treatment of OIN is typically identifying and treating the trigger in certain cases along with either opioid dose reduction and/or opioid rotation2-4. Without adequate knowledge of opioid rotation ratios among different opioids, there is a risk for overdosing or uncontrolled pain5.

One such opioid which is frequently the opioid of choice for rotation to is methadone. Methadone is one of the most common opioids used in the treatment of cancer related pain. Prescribing methadone safely involves the knowledge of its metabolism, adverse effects, drug interactions, and also its mechanism of action at various receptor sites in addition to being familiar with the process (one day vs. 3 day switch) of opioid rotation to methadone6-8. A recent study found that 30% of cancer outpatients undergo opioid rotation and almost all cancer patients on opioids visiting a supportive care center will undergo opioid titration. As a consequence of opioid rotations and titrations, our patients may possess several unused or expired opioids. It is reported that 75% of prescription opioid abusers obtain the drug from their family or friends.9 Unsafe practices of storing or using the opioids may lead to increased availability of these drugs for others to misuse10. As clinicians prescribing opioids, it is our duty to educate patients about locking their pain medication, disposing off unused medications safely, and strictly not sharing them with others.
I’m looking forward to an interesting conversation about these topics. Join me @Reddysuppcare for a tweetchat about pain management in cancer patients.
T1: Prescribing opioids and opioid rotation in cancer patients
T2: Methadone in cancer patients
T3: How can palliative care clinicians address prescription opioid abuse?
1. Caraceni A, Hanks G, Kaasa S, et al. Use of opioid analgesics in the treatment of cancer pain: evidence-based recommendations from the EAPC. Lancet Oncol. Feb 2012;13(2):e58-68.
2. Reddy A, Yennurajalingam S, Pulivarthi K, et al. Frequency, outcome, and predictors of success within 6 weeks of an opioid rotation among outpatients with cancer receiving strong opioids. Oncologist. 2013;18(2):212-220.
3. Reddy A, Yennurajalingam S, Desai H, et al. The opioid rotation ratio of hydrocodone to strong opioids in cancer patients. Oncologist. Nov 2014;19(11):1186-1193.
4. Mercadante S, Bruera E. Opioid switching: a systematic and critical review. Cancer Treat Rev. Jun 2006;32(4):304-315.
5. Webster LR, Fine PG. Overdose deaths demand a new paradigm for opioid rotation. Pain Med. Apr 2012;13(4):571-574.
6. Parsons HA, de la Cruz M, El Osta B, et al. Methadone initiation and rotation in the outpatient setting for patients with cancer pain. Cancer. Jan 15 2010;116(2):520-528.
7. Reddy A, Yennurajalingam S, Bruera E. Dual opioid therapy using methadone as a coanalgesic. Expert Opin Drug Saf. Nov 5 2014:1-2.
8. Salpeter SR, Buckley JS, Bruera E. The use of very-low-dose methadone for palliative pain control and the prevention of opioid hyperalgesia. J Palliat Med. Jun 2013;16(6):616-622.
9. Centers for Disease Control and Prevention (CDC) grand rounds: Prescription drug overdoses - a U.S. epidemic. MMWR Morb Mortal Wkly Rep 2012. Vol 61:10-13.
10. Reddy A, de la Cruz M, Rodriguez EM, et al. Patterns of storage, use, and disposal of opioids among cancer outpatients. Oncologist. Jul 2014;19(7):780-785.
What: #hpm chat on Twitter
When: Wed 1/7/2015 - 9p ET/ 6p PT
Host: Akhila Reddy, MD 
Facebook Event Listing:

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, 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

Tuesday, February 17, 2015 by Pallimed Editor ·

Monday, February 16, 2015

Make the World a Little More Fair

by Lyle Fettig, MD

You meet a 29 year old man with a history of Diffuse Large B-Cell Lymphoma.*  Palliative care was consulted after he presented to the hospital with lower extremity weakness and was found to have extensive new epidural spread of his disease as well as progression of disease in his chest and abdomen.  He was just diagnosed five months ago.  He started chemotherapy with hopes that he'd respond well enough for consideration of a stem cell transplant.  With documented progression of disease, it has become clear that would not happen. 

He'll die soon.  You look at him, his wife, and two year old daughter and wonder why.  The idiomatic thought springs forth naturally, "What did he do to deserve this?" even if you're consciously able to say "this isn't his fault, he doesn't deserve any of this."

Maybe smoking is linked to lymphoma?  Maybe not.  And anyway, he never smoked. Even if he did, how many 30 year olds who smoke succumb to a similar fate?  A tiny percentage. He occasionally drank alcohol, but never did any other drugs.

Maybe it's some other environmental exposure?  Maybe he was exposed to something at work?  He has worked at a facility that makes medical supplies.  Hmm.  No obviously known exposure risk.

There has to be something.

What drives the desire for an explanation?  The answer to this question is complicated, but here's one factor that may drive the desire for many:

The just-world hypothesis.

People who strongly hold this hypothesis assume the world must be fair and may be more inclined to believe that if something bad happens to you, you must have deserved it somehow. This hypothesis sees suffering and concludes that people who suffer must be the kind of people we disdain.  If the world isn't fair, what bad things might happen to me? If unfairness like this exists, it's scary to confront. One way to avoid this fear is to assume fault of the person who is suffering.

You know the patient cannot be blamed for his lymphoma.  Maybe it can be explained by genetics, a quirk of cancer biology. But what about the 70 year old woman who has lung cancer after a 120 pack-year history of smoking cigarettes?  There's no doubt about the relationship between smoking and lung cancer.  The dangers of smoking continue to be clarified and every public health campaign that reduces smoking rates is a good thing.

Is the non-smoking blamer reassuring himself about his own fate?  "That couldn't happen to me- I have never smoked."  Tobacco contributed, no doubt. Can the blamer, armed with the just-world hypothesis, more easily ignore the fact that up to 24,000 people die in the United States from lung cancer every year without having smoked?

In an unfair world, try not to blame the dying person or try to dispute the person's experience of unfairness.  The lifelong smoker may point to someone who lived twenty years longer while smoking.  It's true that smoking is bad, people should stop for their health, and still some people skate through in spite of it.  So it won't seem fair to many who don't.

Watch out for this bias.  If you have feelings of blame (even if unspoken), examine what the source of those feelings might be for you.  Be gentle with yourself if you discover it might be in response to fear of an unfairness which is universal in potentiality.  Examine your own fears.  Don't let them obstruct a compassionate response to the experience of loss and grief which is a source of the patient's experience of unfairness. 

Aim to non-judgmentally provide safe passage and support to all until the end.  The world will be more fair as a result.

*Any resemblance to real life patients is purely coincidental.

Photo: Justice via Shutterstock

Lyle Fettig is a palliative care doctor in Indianapolis where he lives with his wife and two boys, both who love Funky Bones at the IMA 100 Acre Park

Monday, February 16, 2015 by Lyle Fettig ·

Sunday, February 15, 2015

Stepping Up To The Plate: Lessons Learned From Being A Caregiver

by Jeannette Ross, MD
2014 a very special thanksgiving Chica and the whole family
This blog post is part of the world series of blogs and was posted first in Geripal. 

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

Chica usually went by herself to appointments, however coincidentally she was accompanied by one of her sons and family the day the ENT delivered the news she had cancer. Her doctor was very kind to in addition give my husband and me a call to explain to us the physician family members what the diagnosis and plans were. Having been so many times in the bearing side of the news I was a little stunned to be on the receiving side of the bad news. Subsequently several of us accompanied Chica to these initial appointments with the specialists performing her surgery.

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 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

I also read his other book in the kindle app that talks about his experience with laryngeal cancer (My Voice: A Physician's Personal Experience With Throat Cancer). I was reading this one while I was accompanying Chica a few days after her laryngectomee. He highlighted some of the challenges he had while in the hospital and medical errors. We followed some of his strategies like writing down the questions for the doctors ahead of time.


  • Communication after 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
Dr Jeanette Ross is a Geriatrician and palliative medicine specialist in San Antonio. You can find her on Twitter @rossjeanette

Photos credit: David Ross

Sunday, February 15, 2015 by Jeanette Ross ·

Friday, February 13, 2015

Reclaiming Valentine's Day

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.


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.


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 by Emily Riegel ·

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