Wednesday, June 24, 2015

Steal This Idea: Hospice and Palliative Care App Reviews

by Christian Sinclair

This is part of an ongoing series where we share ideas that we would love to see implemented, but frankly don't have the time to actually accomplish. But if a smart person with a little extra time like yourself were to steal this idea, you might find an audience, and maybe some people might be willing to throw a few bucks behind it. Heck, if you can pull it off, we would love to help promote it or if you want to guarantee a built in audience we can officially make it a part of the Pallimed Network. 

Idea: Hospice and Palliative Care* App reviews

*This idea could really work for any specialty

Smartphones and tablets. Lots of people have them and we use them to play games, message our friends and family, participate in Tweetchats (shameless plug!), and oh yeah, to make us more productive at work.

I've been sitting on this idea for at least 5 years, when I created the first Pallimed apps for iOS and Android. To do some research, I started collecting apps from various hospice organizations to see how they used the technology.  I branched out from there to collect other health care related apps, that could be utilized by patients and families. Many of these apps have very few ratings, especially when compared with Clash of Clans or whatever app of the moment is, so it makes it difficult to tell the utility.

But what if we had a group of individuals willing to try out different apps and give all of us palliative advocates a better understanding of how it might work for us?

Eric Widera over at GeriPal (read, subscribe, comment if you don't already!) recently posted a list of multiple apps and online tools from a presentation at the American Geriatrics Society 2015 meeting. Look you already have a list of apps to review!  No need to go hunting. Let's review the VitalTalk app or the Health Communications app. So many out there. I also have a list of over 50, I have tried that I would share to help you get started. You could even look at non-health care apps focused on productivity and other functions for the busy clinician!

And really this is a win-win. The developers of these apps want people to benefit from them, and we want to make computers work for us to make our lives better, easier, and more awesome.

Audience: Hospice and palliative care clinicians, patients and families
Difficulty: Easy to Medium
Crowdsourcing: High possibility (tell people what app you will be reviewing and have them try it out the same week, so they can comment on your review)
Cost - Financial: Many of the apps are free, some may cost $1-5,
Cost - Time: Trying out app - 30-90 min over a week; Writing up a review 1-2 hours
Revenue potential: Minimal - might be able to find a few patrons to help fund purchasing apps
Online tools needed:
    - Tablet and smartphone: Helpful to have access to iOS and Android versions
    - Gather crowdsourced reviews: Google Forms, SurveyMonkey or similar
    - ^Website (basic): Can use Pallimed or get your own for under $12/year
    - ^Newsletter service: Mailchimp or similar
    - ^Payment (if needed to purchase apps): PayPal, Apple Pay or similar
^ - optional

Expansion ideas: None identified.

If there is an app you think we should review leave it in the comments on this post.

Photo Credit: "Steal This Idea" by Christian Sinclair is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

Wednesday, June 24, 2015 by Christian Sinclair ·

Talking to Kids about Death and Dying

by Amy Clarkson

It’s difficult for adults to talk to one another about death. The topic makes us uncomfortable. Despite this fact, most of us will muster up the courage and have these hard conversations when the need arises. There is something, however, far more difficult than talking to our peers about death and that is talking to children about death.

Parents will have memories of questions kids have posed about death when a pet has died or bird is found deceased outdoors. These awkward moments force us as adults to simplify a complex concept on the fly, and usually unprepared, at best we stumble our way through.

What do we do when it’s not a pet; when the impending death of a parent or grandparent looms?

That answer is as complex as the topic of death itself. There are some basic facts however, that help guide us. One, we know that avoiding the topic of death is harmful. Kids are very observant, and usually have already encountered death on T.V. or have seen dead insects. Though it may feel like we are protecting children by not talking about it, research shows it creates much more problems for the child.

It is also not a good idea to force information that may be too complex on a child. The best approach is a balance between avoidance and confrontation. The goal is to be honest, sensitive, and approachable.

Another mistake adults often make is to use euphemisms when talking to kids. Children are literal, so when an adult says, “Your Grandma is in a better place now,” Kids literally think Grandma might be at Disney World. The phrase “he just went to sleep” is also very scary for a child to hear. Children will become afraid of sleeping themselves, assuming they too might never wake up.

It’s helpful to keep in mind that the developmental stage of the child is important to understanding the concept of death. For instance, kids ages 2-4 don’t grasp the permanence of death. Death is temporary to them, and they will continue to expect the deceased to come back. This age group may react to death with separation anxiety, withdrawing, regression or confusion.

Kids ages 4-7 often have magical thinking. This group will often feel responsible for the death and may connect something completely unrelated to it. For instance, a fight at school gets linked to the reason they think their dad is dying. This group may appear unaffected and unemotional after someone dies. Because of the tendency to feel guilty for the death, this age group needs good communication and openness.

Once kids are 7-10 they begin to realize death is not reversible. This age group is very curious about death and may ask insensitive questions. They can view death as a punishment and will often start worrying that others around them may die, or that they themselves will die soon.

People often ask if children should visit someone who is dying. The best advice is to leave the decision up to the child. If they are interested, they should visit with thorough preparation on what they will see when they arrive. They should be given permission to leave at any time. Finally, children should never be forced or made to feel guilty if they don’t want to participate.

Even though death is a difficult topic for adults, if we approach it the right way with kids, the foundation for healing and understanding for a lifetime can be created.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

Photo Credit: Still from the movie, "Is Anybody There?"

by Amy Clarkson ·

Tuesday, June 23, 2015

Garbage in, garbage out: The Medicare Part D prescriber database

by Christian Sinclair

A colleague of mine recently brought to my attention his listing of all the medications he prescribed in 2013 on the Medicare Part D prescriber database. What's that you say? You have not heard of this tool to find out what medications your doctor prescribes?

At the end of April 2015, Medicare (CMS) released a database of cumulative prescriptions by provider from the calendar year 2013. Sites like ProPublica took the raw data and setup a clean interface that allows you to sort the data by state, drug prescribed and provider, among other nifty features.  (Similar to what happened with Physician Medicare billing data in 2012.)

The reason for releasing all this data per CMS:
This new dataset provides key information to consumers, providers, researchers, and other stakeholders to help drive transformation of the health care delivery system. This data enables a wide range of analyses on the type of prescription drugs prescribed in the Medicare Part D program, and on prescription drug utilization and spending generally.
No worries, patient information is not shared, but what does this really tell us about physicians, and in particular physicians who practice in hospice and palliative care settings?

Admittedly, some of the national and state level data is interesting.  Knowing the average number of drugs prescribed by Family Medicine (74.9) is higher than Internal Medicine (65.7) could be used for some fun ribbing about who knows the most about what. Seeing that Nexium ($2.5B), Advair ($2.3B) and Crestor ($2.2B) are the three most costly medications in terms of total expense helps demonstrate the power of advertising.

But what is the purpose of looking up an individual doctor and their prescribing patterns?  Does this help the public figure out quality? No. Could this be used to find outliers? Sure, but why does everyone's data need to be published to find the outliers? The Forbes 100 list doesn't need to publish the net worth of every person to figure out who the outliers are. Please understand, I am fine with finding physicians consistently prescribing unsafely, but that can be done with CMS and state boards working together and doing investigations.

The real problem with this data is that it is woefully incomplete and without context to answer the questions some people are asking it. Looking at one individual physician's data, one finds it difficult to understand.  Let's take a look at some examples for our field of Hospice and Palliative Medicine (HPM). Even more important since we tend to prescribe a lot of opioids and benzodiazepines for complex symptom control. Oh why did I cross that out? Because the reason and appropriateness of a prescription cannot be gleaned from this database. Unfortunately, someone may look at your data and consider you a 'pill mill' doc without that context. That's not right.

Some problems with the database:

  • It lists only one specialty for each provider. So if you are a family medicine doctor who does a lot of hospice or palliative care, no one will be able to tell with this database because it may likely list you as just a family medicine doctor.
  • Specialties are listed multiple times. Looking at the National List of specialties, 'Hospice and Palliative Medicine' is listed 9 times (which links to 94, 94, 16, 10, 4, 4, 3, 2, and 1 for # of physicians) totaling to 228 HPM physicians in the USA. That cannot be right. in 2013, there were over 6,000 board certified HPM docs and this database only found 228 of them? 
  • Lots of physicians are missing. I looked up 10 doctors I commonly work with in outpatient and inpatient settings and found listings for only 4 of them. How can you compare someone to their peers if you are missing such a large number? Looking for dirt on me? Too bad, I'm not in the database, because I was in a non-clinical role in 2013.
  • Scripts attributed to NPs and PAs? Guess who gets the credit for those scripts? I nmany states the supervising physician does. So if you supervise the practice of 2 NPs then you may have 3x the prescribing rate as your peers. But you can't tell that from this database.
  • Hospice Medical Directors prescribe under the Medicare Hospice Benefit. So all the comfort kits, opioids, benzodiazpines prescribed appropriately for dying patients on hospice will not be included in this database of Part D prescriptions.

So at least tell your physician friends to check out their own name (modern physician equivalent of 'Googling' yourself), so you know what people are seeing about you. If you don't like what you see you may not have much recourse, but the next time you start hearing about physician level data being published you may want to have a voice in the matter.

Overall, I find this database to not be very helpful except looking for national and state trends and with future database releases looking at trends over time. Maybe it will help us understand how REMS may change the available number of prescribers of certain opioids. Recent publications trying to shame doctors who prescribe large amount of certain medications are disheartening to read on many levels, because when it comes to this database, the numbers are not the whole story. Garbage in, garbage out.

Christian Sinclair, MD, FAAHPM is editor of Pallimed, and practices palliative medicine at the University of Kansas Medical Center. He is a fan of data, statistics and science, in addition to appreciating the value of starting with good data and informed context.

Image credit: Garbage In, Garbage Out by Austin Kleon via Fickr and Creative Commons License

Tuesday, June 23, 2015 by Christian Sinclair ·

Monday, June 22, 2015

No more death panels: Why #HPM needs to talk about legislation and policy

by Judy Thomas, JD

If you ever questioned whether legislation plays a critical role in palliative care and serious illness let me remind you of the year 2009, when “death panels” became a legislative myth so ubiquitous it warranted its own entry on Wikipedia, was recognized as the “Lie of the Year” by, and is now responsible for a handful of debunked rumors on Snopes (see this, and this, and this.)

As CEO of the Coalition for Compassionate Care of California—a leading champion of palliative care—I understand how crucial it is keep a finger on the pulse of policy and legislation. In California we led efforts to pass POLST legislation in 2008 (AB 3000—Wolk) and championed the establishment of a pilot palliative care benefit through Medi-Cal in 2014 (SB 1004—Hernandez).

CCCC’s legislative success is due to a combination of establishing and maintaining relationships with policymakers and their staff, keeping abreast of national palliative care initiatives, and forming partnerships with key organizations who help advance our mission.

Care Planning Act of 2015

Even though CCCC’s policy focus is in California, I always keep an eye on national legislation that might impact palliative medicine and serious illness.

Just last week a bill was announced in the Senate that we should all know about: The Care Planning Act of 2015 (S 1549). According to the bill language, S 1549 will:
Amend title XVIII of the Social Security Act to provide for advanced illness care coordination services for Medicare beneficiaries, and for other purposes.
The Care Planning Act would fund advance care planning discussions with doctors, nurses, and other healthcare professionals. Additionally, the legislation would create an Advanced Illness Coordination Services pilot program that offers home-based support of patients with multiple and complex chronic conditions.

This is music to my ears.

The Care Planning Act is supported by a swath of professional associations representing the medical community. The American Academy of Family Physicians (AAFP) recently gave S 1549 a “Big Thumbs Up” on their website.

What do you think?

On June 24, 2015, I will be moderating the #HPM chat on the topic of “Public Policy and #HPM.”

In this chat I aim to get you thinking about a wish list of policies that could help you in your job. We will also talk about the Care Planning Act of 2015, and what is happening in states around the country.

WHAT: #HPM Chat on Twitter
WHEN: Wednesday, June 24, 2015 / 6pm PT or 9pm ET
HOST: Judy Thomas, JD - @JudyThomasJD

P.S. If you live in California and want to get involved with our work in public policy, drop me a line. This year we are keeping our hands full with a bill that would allow NPs and PAs to sign POLST forms under the supervision of a physician (AB 637—Campos), and a bill that would establish a POLST registry in California (SB 19—Wolk).

Judy Thomas, JD, is CEO of the Coalition for Compassionate Care of California, a nonprofit organization that promotes high-quality, compassionate care for all who are seriously ill or nearing the end of life. Together with their partners, CCCC is shaping the future of palliative care at the local, state and national level. As the voice of palliative care in California, CCCC incubates and disseminates models and ideas to improve access to quality care for all people.

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.

You can access the transcripts and analytics of #hpm chats through @Symplur. 

Monday, June 22, 2015 by Pallimed Editor ·

Saturday, June 20, 2015

Getting Started at the End of Life: Two Social Worker Perspectives

A conversation between two specialists

At both ends of the generational pendulum lie two groups that may seem to be daunting to some: children and the senior population.  These are specialty populations because there are unique considerations with aspects of their medical care, especially within the framework of palliative and hospice care.

Here Allie Shukraft, pediatric palliative care social worker, and Lizzy Miles, geriatrics hospice social worker, discuss some of the differences and similarities between these two seemingly divergent specialty populations. Allie and Lizzy also describe their social worker roles as they relate to their patient groups.

This article about the initial social work role in hospice and palliative care is the fourth article in a series of joint conversations into these populations. (Read the other posts: Developmental Life Cycles, Social Work Research, End-of-Life Decisions)

Pre-admission discussions

Lizzy: There are multiple stages during end of life where a hospice social worker might get involved. I have been asked by facility staff to have the initial conversation with families about hospice. It used to surprise me that I would be talking about hospice to the family before the physician does, but now I understand. The patient may have seen a specialist and received a Stage IV cancer diagnosis, or they have had a series of sudden changes. The nurses and aides at a facility see the patient every day and may themselves believe hospice would be beneficial, but don’t feel comfortable having the “hospice” conversation with families by themselves. I may be told that the family is not yet aware of the patient’s eligibility for hospice, and my role is to provide information about hospice for the family to make an educated decision. My goal in this meeting is simply to listen, and when appropriate, inform. I do not have an agenda to “sign them up” for hospice, and I think they are grateful that they are not pressured. It takes time to come to terms with the idea that a loved one is dying.

Sadly, there have been times where, by the family’s description, I can sense the patient is very close to actively dying. In some cases, I am the first one to really talk to the family about the immediacy of the situation. Usually this initial conversation happens with the family away from the patient per family choice. In these meetings, the family generally has a lot to say about the history of the patient’s decline. They may want to talk about every hospitalization and medical experience they have had over the past few years. I take the time to listen to their extended stories. Active listening involves reflective statements and acknowledgement of all that they have been through. I want them to feel they are not alone and that we will get through this experience together. I can usually tell whether they are emotionally ready for hospice if their stories thematically touch on futility and a patient’s continued decline, despite all efforts for curative treatments.

Allie: The start for an inpatient pediatric palliative care social worker is often different, less “urgent” than it can sometimes be for hospice. In the pediatric world, the inpatient medical teams often struggle with when to consult our team. With some diagnoses, we are consulted immediately because we know that the diagnosis typically causes a child to lead a shortened life span. However, with others, this can be a more nuanced discussion. The talk of the possibility of death, or even the fact that the child is “seriously ill” at the moment can be too much for some families, and even for some physicians. Many pediatric palliative care programs have chosen to change their names because of the stigma surrounding the word “palliative”.

Our team is known as the Pediatric Advanced Care Team (PACT) because we looked at studies that showed medical teams more readily referred to these teams than teams with the word palliative in their name. Often, when I introduce our team to a new family, I will make sure to explain that we are also known as the palliative care team, and to explain our definition of this term (providing added support for patients and families dealing with serious illness). Sometimes I will try to put the child’s current condition into perspective, explaining how sick s/he is in the context of the hospital. This is not to dishearten families, but rather to help them find that balance between hope for cure and acceptance of a potential reality that they may not want.

Of course, as you mention above, I tailor that initial meeting to where the family is at that moment so that I can join them there. It is crucial to convey that what they want to tell me about their child or themselves is important and that I have only a minor agenda at best. This can also present a challenge because when the diagnosis or situation is not as clear cut, we are often consulted at certain “decision-points”, times when family members have to make a choice about whether to treat a problem or not. A common example from our experiences is the decision to have a tracheostomy placed to make breathing easier. For some parents, this is a relatively clear-cut decision. The trach is intended as a short-term intervention that will help the child to breathe until s/he grows and can have it removed. For others, however, deciding to have a trach placed in their child can be the signal of a permanent decline in functioning or a change that will limit their ability to do things. Although some patients with trachs can move freely, others must remain tethered to a ventilator, which, though use of this can be taught to most parents, presents families with a huge change in their child’s and their own mobility. Although many times in these situations we have an opinion about what we might do in a similar situation, we are often reminded that we do not know the entire family context and how this decision fits into this context. We do not know the family’s belief systems, or other thoughts about morality that may steer their decision-making, so it is vital to advise and answer their questions completely, but ultimately let them know that, no matter their decision, we have their back as best we can.

Information gathering at admission

Lizzy: My role in the admission meeting is to try to build rapport with patients and families. My approach varies with every admission that I do, contingent on the situation. The exciting part of the hospice social worker job is you never know what to expect, and you need to be flexible and immediately responsive to the situation. If we are admitting someone as they are dying, I’m going to focus on the immediate needs of the patient and family. I will ask direct questions related to the family’s expectations surrounding time of death. I have found that it is helpful to know whether families wish to be present when the patient dies. If they say they do want to be there, then I provide education regarding patient choices and how the patient may pass when the family is not present. I will ask about funeral homes. I tell families they do not need to know exact arrangements, but it is helpful for them to know in advance who they are going to call “when the time comes.” With late admissions to hospice, it is common for families to say they have no idea what to do regarding funeral homes. I ask them if there are any funeral homes that they have used for other families.

For all admissions, I also try to find out the patient’s and family’s previous experiences with death and/or hospice. This informs me of their expectations. Commonly, patients and families will assume that this death will be like the others they have experienced. If they had negative experience previously with a loved one in pain, they may assume that pain is inevitable.

Finally, I aim to get to know the patient as they see themselves. I want to know what and who is foremost to them. One time I made the mistake of using a label that a daughter had provided to me. She called her dad a “biker,” but when I asked the patient about being a “biker” he became upset. He had a different vision of bikers, and did not want to identify with that subculture. That was a significant lesson for me to not necessarily adopt a family member’s visions of their loved one.

Allie: My role is very similar, and building that trust is key. Parents whose children have serious illness often have to make very difficult decisions about how their child will live or die. For many of these decisions, the outcome is unclear, so they struggle even more to know which way to go. By presenting ourselves as non-judgemental resources who will give input but will support the parents regardless of their decisions, we become that person that a parent can say something that feels awful, unspeakable, but in reality, is likely something that some other parent has said or felt before them. Permission is a big part of setting this up and something we talk about right from the start.
Also in the pediatric world, we find that not only is the family’s loss history important but so is their health history. More and more, when we talk with families about the decision to have their child get a tracheostomy, they have had some experience with someone they know who has had a trach. This can create problems, if for example, this was a scary experience for them when they were a child, or perhaps a negative experience but the medical technology has vastly improved with time. However, it can also be helpful for family members to know what they are in for with a certain decision.

Building rapport

Lizzy: My approach with patients and families is to present as open, interested and caring. I try to have 100% focus on the present moment. There have been admission visits with one patient and there have been admissions with 10 family members watching the discussion. I am an extrovert and I think that might help me be comfortable with meeting new people. Another trait that is helpful is to come across as non-judgmental. Social workers see all kinds of living situations and family dynamics. Sometimes we’ll observe that a family member feels guilty for how often they visit (or don’t visit). I spend a lot of time normalizing feelings that patients and families have.

Allie: Yes, being non-judgemental about social and family situations are also important. One of the roles I see as my job is to understand the context in which this family is operating. Who in the family is working and what does their money go to? Who makes decisions? Who provides emotional support? Who is the spiritual rock? As an adult with several unique family dynamics in my own life, I think this helps me remember that family is what you make it, and by understanding what they have made their family, I can help others understand why they may not make the choices we think they should, such as “not visiting enough” or “not getting enough sleep”. Unlike you, I am an introvert, so my style might be a bit quieter, but I do have dimples and smile often, so that helps get my foot in the door sometimes. I often will break the ice with an observation about the patient or a sibling, which helps show that interest that you mentioned. There are families that I meet with who are also introverts, and this can be a bit awkward, but I just figure if I keep asking questions, I will eventually land on a topic of interest for someone in the room and we can go from there.

Note: If there is a topic that you would like Allie and Lizzy to cover in their articles, please do send us a note

Click here for more Pallimed posts about social work.

Allie Shukraft, LCSWA, MSW, MAT, is a pediatric palliative care social worker for Carolinas Healthcare System in Charlotte, NC where she loves reading and walking with her dogs. You can find her on Twitter @alifrumcally.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio at Greystone Hospice. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW

Saturday, June 20, 2015 by Lizzy Miles ·

Tuesday, June 16, 2015

Steal This Idea: Conference presentation deadline notification

by Christian Sinclair

This is part of an ongoing series where we share ideas that we would love to see implemented, but frankly don't have the time to actually accomplish. But if a smart person with a little extra time like yourself were to steal this idea, you might find an audience, and maybe some people might be willing to throw a few bucks behind it. Heck, if you can pull it off, we would love to help promote it or if you want to guarantee a built in audience we can officially make it a part of the Pallimed Network. 

Idea: Palliative Care* Conference presentation deadline notification

*This idea could really work for any specialty

Don't you hate it when you miss the submission deadline to the big palliative care conference you really love? You had a great presentation about palliative care in the ICU and now you are going to have to wait a whole year before you can think about submitting it again, and by then you may not be as thrilled about it. ARRRGHHH!  Or you may miss the deadline AGAIN. What a Charlie Brown moment.

But what if you had a simple way of knowing about the Critical Care meeting that is being held in your town in 9 months? You could submit it there too!

This happens to me a lot, so I started keeping a list of various national and international conferences to consider submitting a presentation. But I was spending too much time updating it and not enough time submitting, but it occurred to me to reconsider this as a crowdsourced effort.  With a cloud document service like Dropbox or Google Drive, you could have a document that anyone could view and at a glance see what conferences had abstract deadlines currently open.  You could also simply categorize them into Regional, National and International for location, and Primary or Secondary in regards to their palliative care content. AAHPM, CAPC and NHPCO would be primary, whereas ASCO, CHEST, AAP would be secondary.

Using once a week or once a month email, people could opt in to see what conferences they might be interested in. With people self-selecting the geographic locations and type of conference they are interested in, you could automate a lot of the notifications. Getting a few academic programs together you could find a group of 5-10 people who would be willing to submit information on various conferences, which would also allow for quality control.

Audience: Palliative care programs (large or academic), large hospice organizations, researchers, and fellows
Difficulty: Easy to Medium
Crowdsourcing: High possibility
Cost - Financial: Can be done for less than $12/year with free online tools
Cost - Time: Depending on your thoroughness - 10-60 minutes per week
Revenue potential: Minimal - might be able to get a few dollars per year, per subscriber
Online tools needed:
    - Gather conference info: Google Forms, SurveyMonkey or similar
    - Document storage/crowdsourcing: Google Docs, Dropbox or similar
    - Social Media Conference info: Symplur
    - ^Website (basic): Can use Pallimed or get your own for under $12/year
    - ^Newsletter service: Mailchimp or similar
    - ^Payment (if using subscription): PayPal, Apple Pay or similar
    - ^Automated notifications: IFTTT
^ - optional
Expansion ideas: Alerts for registration and early bird deadlines if you plan on attending.
Photo Credit: "Steal This Idea" by Christian Sinclair is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

If you would make use of this if it existed, please comment below.

Tuesday, June 16, 2015 by Christian Sinclair ·

Palliative Care in Oncology Symposium 2015 - Coming soon!

by Christian Sinclair

In 2014, ASCO teamed up with AAHPM, ASTRO and MASCC* to present the first national palliative oncology conference and it was a huge success in terms of attendance and generating interest in cross-field collaboration.  Two of our most popular Pallimed posts last year were reviews of the conference.  #PallOnc became an established hashtag because of the online chatter about the conference. Check out the collection of good tweets here.

Clearly that success begs for a repeat. The meeting will be held again in Boston on October 9 and 10, and registration is currently open.  If you are doing work in this space, I would really encourage you to consider submitting an abstract (deadline June 23!), because we need a good showing from palliative care clinicians.  I know many of you are providing great clinical care, but don't forget to gather some data on your program's impact so we can demonstrate the need for integrated palliative care in oncology practices.

Who knows if this area of collaboration between oncology and palliative care keeps growing, then maybe we could convince the National Cancer Institute to make well-supported fully integrated palliative care teams part of the NCI Cancer Center designation**.  Or maybe we convince US News and World report to place a larger emphasis on utilization (not just presence) of palliative care teams.*** Who knows! A boy can dream.

If anyone is going to this conference and would like to write up a report back, we would love to hear from you.  Please comment below or email editor @ pallimed dot org

So get going and talk with your team and submit your abstract!

Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas Medical Center, editor of Pallimed, and has been known to submit an abstract or two. You can find him on Twitter @ctsinclair.

Photo Credit: Louise Mason (@PallmedMD) via Twitter

*ASCO = American Society of Clinical Oncology
AAHPM = American Academy of Hospice and Palliative Medicine
ASTRO = American Society for Radiation Oncology
MASCC = Multinational Association of Supportive Care in Cancer

**There is only one mention on NCI's Cancer Center website of palliative care and it is in a PDF about the University of Wisconsin listing Jim Cleary's department. For a prestigious designation like NCI Cancer Center, surely we could encourage them to make palliative care a bigger priority.

***Palliative care is already included as part of their 'patient services' index, but it is only marking if there is a presence of 'palliative care' not about utilization.

by Christian Sinclair ·

Monday, June 15, 2015

Congratulations to the 2015 Cunniff-Dixon Award Winners!

by Christian Sinclair

Every year the Cunniff-Dixon Foundation, in conjunction with the Hastings Center, award a select few physicians who have demonstrated great end-of-life care through their clinical efforts and dedication to the field. They are released in the Spring each year, and we wanted to help recognize the accomplishments of the awardees.

The 2015 awardees are:

Take some time and read about these great physicians. If you know them, please make sure to congratulate them. In addition, the story behind the awards is a wonderful read. The two names in the award are not the result of a hyphenated marriage, rather they are the last name of a patient (Carley Cunniff) and her physician (Peter S. Dixon).

"Not how the Cunniff-Dixon Awards are announced"
What I have always enjoyed about these awards is they focus on great clinical work, which is inherently local.  These are not necessarily the people who get wide name recognition by writing research grants or speaking at national meetings. What they are doing is providing great care and changing lives in your town and that deserves recognition on a grander scale.

I have seen this first hand. It was a pleasure to work closely with Dr. Ann Allegre, the medical director of Kansas City Hospice and Palliative Care, who was one of the award recipients in 2011. Working with her since 2004, it seemed everywhere I went in Kansas City, she had helped work with doctors and nurses to improve end-of-life care.  I know you know someone like her, who works in your city or your state and provides exemplary end-of-life care. Make sure to nominate them!

For the next round of awards, you still have time to nominate that great colleague of yours who has made a difference in your community by providing excellent clinical service and leadership. The deadline is November 30, 2015.  As it gets closer, you may see more announcements here and throughout the various Pallimed Network channels.

Past Pallimed and Geripal posts about Cunniff-Dixon Awards

Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas Medical Center, editor of Pallimed, and loves to see when great things happen to hospice and palliative care clinicians! Read more posts from Dr. Sinclair on Pallimed.

Monday, June 15, 2015 by Christian Sinclair ·

Sunday, June 14, 2015

How much does hospice help the surviving family?

by Christian Sinclair

One of the classic benefits touted by any clinician when describing hospice is bereavement support for the family for 12 months after the death*. What bereavement support looks like depends on the hospice agency. Some are large enough to have departments of specially trained bereavement counselors, and some have a social worker who makes it part of their role.  What they offer may range from phone, email or letter correspondence to individual and group therapy sessions depending on the complexity of the case.  What I have always found interesting is this is not considered part of any insurance or Medicare/Medicaid benefit for someone who dies without hospice in a hospital or nursing home. Anyways, back to hospice and bereavement support...

One of the challenges with studying what hospice does is some of the fundamental parts of it are considered standard of care without ever being tested or analyzed**. Prognostication as eligibility criteria? Yeah, that makes sense for a benefit for dying people, except the science of prognosis has not kept up with the demands of the system for ever-increasing accuracy. Interdisciplinary care required? Sure, that makes sense, but how do we know which team members really work best for each patient, we've never tested it to look for improvements. Bereavement support for families - well now we have a study which may help us understand the impact of this lauded benefit.

Ornstein et al published "Association between Hospice Use and Depressive Symptoms in Surviving Spouses" in JAMA Internal Medicine in May 2015 looked at over 1,000 widowed spouses from the Health and Retirement Study (HRS) data set. 30 percent of the patient-spouse dyads had hospice experience for more than 3 days prior to death. They compared depression scale scores between spouses who had hospice experience and those who had none (to be accurate none, or 1-2 days of hospice). 52% of widowed spouses had more depressive symptoms over time no matter the exposure to hospice. In looking at improvement in depression scale scores over time, more widowed spouses had improvement if they had hospice compared to those who did not, although it was not significantly statistic (28% vs 22% (p=.06) of all spouses; 27% vs 21% (p=.10) for spouses identified as the primary caregiver.)

The most favorable finding for hospice use to help depressive symptoms in surviving spouses was not reported in the abstract results. Of the people who were interviewed (as part of the HRS study), 38% of spouses with hospice experience had improved depressive symptoms, a statistically significant (p=.01) improvement over those who had no hospice exposure (26%). For any of you odds ratio fans, that came out to an OR of 2.15!

Most media reports gave pretty favorable headlines to this study, which I think is close enough for public knowledge and understanding. Can you use this research in your hospice 101 presentation? Sure. Can you make some nifty graphics to share online? Sure. Can we use this information to help us better structure interventions for the bereaved family? Maybe.

First, while this is a strong study in terms of numbers, matching interventions with controls, and being somewhat objective to the intervention of hospice***, the study was unable to tell what bereavement interventions occurred and therefore it is difficult to tell what interventions are helpful and which have no effect or potentially harm. So this is not a full ringing endorsement of bereavement services, but rather hospice use.

As mentioned earlier on close examination it is not truly hospice for 3 or more days vs no hospice. The true selection criteria were hospice for 3 or more days vs 0,1,or 2 days of hospice. There isn't a solid explanation in the article for this awkward choice of group selection, and the only place it is mentioned is in the footnotes of Table 4. The authors rightfully note hospice enrollment for even 1 or 2 allows for access to bereavement services, so theoretically we are not testing two different groups.

So, overall this study (despite the confounding selection choice) does help demonstrate hospice use possibly leads to better depressive symptoms, but we need to look to other studies for a more accurate depiction of the impact of bereavement services on spousal and family coping over time. This is an area of study which would benefit from a good mix of qualitative and quantitative research,

Christian Sinclair, MD, FAAHPM is a palliative care doctor at University of Kansas Medical Center, and has been a hospice medical director for 11 years. He has witnessed the good works of bereavement counselors. 

*The regulations say up to a year, but nearly every hospice offers about 13 months of support to get people past the anniversary of the death.

** You know what else became standard of care without being tested or analyzed? PEG tubes in advanced cognitive impairment. It just 'made sense.' Only recently have we started to get the evidence published that it does more harm than good.

***  The depression scale was part of routine screening, not some asking you to enroll in a study of how hospice affects depressive symptoms in surviving spouses.

ResearchBlogging.orgOrnstein KA, Aldridge MD, Garrido MM, Gorges R, Meier DE, & Kelley AS (2015). Association Between Hospice Use and Depressive Symptoms in Surviving Spouses. JAMA Internal Medicine PMID: 26009859

Sunday, June 14, 2015 by Christian Sinclair ·

Saturday, June 13, 2015

Fear and Isolation of a Weak Immune System

by Christian Sinclair

In palliative care, the symptoms we frequently encounter (fatigue, pain, nausea, dyspnea, depression, anxiety) have unique challenges, yet many of us have a comfort and confidence in the availability of therapies and the understanding of the symptom. Recently, I have seen two uncommon symptoms, prolonged isolation and fear as a result of a weak immune system. Frankly I don’t quite have a confident construct to understand and treat these two novel issues. It is not any single case that has stood out, but as I work more in outpatient palliative care in an academic cancer center, these themes of fear and isolation are pronounced and different than the fear and isolation that we may see in patients who are in their last days of life.

For many people undergoing chemotherapy or transplants with anti-rejection medications, they find themselves with prolonged periods of weakened immune systems. Obviously there are more dangerous periods with severe neutropenia (low white blood cells), but it is a new situation (to me, at least) when the immunocompromised state is more chronic, more permanent. I understand the biomedical and infectious issues fine. It is the psyschosocial aspects which have piqued my interest.

It is not uncommon to hear patients say that have cut out their favorite outdoor hobbies, or describe themselves as newly minted introverts. “Church? I’d love to go to church, but it isn’t good for me to be around that many people. I could get sick.” “We had a family reunion, but I only stopped by for a few minutes to say hi to everyone. There were a lot of young kids there with germs.” These are real injuries to quality of life, and there is no medicine that can fix that.

Now of course, not everyone who is chronically immunocompromised feels this way, but I am seeing a new trend for my clinical experience. If I want to do a stand-up job for patients, I feel I need a better understanding about the psychological aspects of infection control. And when I don’t know what to do, I go to the literature!

Looking around PubMed there is not too much about the long-term psychosocial impact of infection precautions. Most papers are focused on hospital based isolation (easier to study probably) compared to long-term self-imposed isolation as a result of being chronically immunocompromised. But let’s see what we can learn.

Prototype for isolation gowns?
As you may have already guessed, people who were placed in isolation in hospitals have been found to have (over multiple studies): lower self-esteem, more anxiety, more depression, more fear, more isolation, less nurse and doctor visits, less time when those clinicians were there, more adverse events, less satisfied with their care. Patients and families also do not understand the reasons for isolation in the hospital setting. (Perhaps we send mixed signals, or do not inform well?). Although in chronic immunosuppression, the reason for isolation is most likely the patient’s own fear of getting any infection.

Otherwise there really is not much published on the psychosocial risk and impacts of chronic immunosuppression. I also looked at some of the HIV/AIDS literature, but much of the psychosocial studies were not about the issue of isolation secondary to being immunocompromised. Even long term quality of life studies for people who have received transplants, focus on the frequency of infections and related hospitalizations when discussion of immunosuppression, not the risks of fear or isolation.

I have many more questions now on this topic, all without great (published) answers. How effective are the various ‘germ-free’ strategies? Do we sometimes go overboard to the detriment of patients? Is contact with other people potentially of more benefit than the risk of an infection? How do we help build resilience and support for people who are feel so isolated (meditation, prayer, FaceTime, Skype, and Frankl’s “Man Search for Meaning” are some ideas)? Does it help to let them see your face at least once before you put on the mask?

So without a lot of good published evidence, I still don’t quite have a good context in which to understand these trends. Hopefully, the patients and families I meet will teach me something. I’m really interested to see if any other palliative care clinicians, oncologists, BMT docs and nurses, or transplant professionals have any good tips or evidence. Also if you are a patient or family member, it would be great to hear your experience dealing with chronic immunosuppression.


Christian Sinclair, MD, FAAHPM is a palliative care physician at the University of Kansas Medical Center in Kansas City, KS and editor of Pallimed. In his free time, he enjoys coming up with nicknames for the new family dog, Spud.

Photo Credit: "Splendid Isolation" by Colin Smith, licensed via Creative Commons
Photo Credit: "Betty Ford's lemon yellow polka dot gown" by Wikimedia Commons, licensed via Public Domain

Saturday, June 13, 2015 by Christian Sinclair ·

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