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Steal This Idea: Hospice and Palliative Care App Reviews 
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.

Wednesday, June 24, 2015 by Christian Sinclair ·

Talking to Kids about Death and Dying 
For more Pallimed posts on Children and Grief see here.

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

by Amy Clarkson ·


Garbage in, garbage out: The Medicare Part D prescriber database 
The reason for releasing all this data per CMS:

Some problems with the database:

Tuesday, June 23, 2015 by Christian Sinclair ·


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 PolitiFact.com, 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.


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.

Monday, June 22, 2015 by Pallimed Editor ·


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

 

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.

Saturday, June 20, 2015 by Lizzy Miles ·


Steal This Idea: Conference presentation deadline notification 
Idea: Palliative Care* Conference presentation deadline notification


Tuesday, June 16, 2015 by Christian Sinclair ·

Palliative Care in Oncology Symposium 2015 - Coming soon! 
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.https://twitter.com/ctsinclair

Photo Credit: Louise Mason (@PallmedMD) via Twitter

*ASCO = American Society of Clinical Oncology
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.



Congratulations to the 2015 Cunniff-Dixon Award Winners!


The 2015 awardees are:

Past Pallimed and Geripal posts about Cunniff-Dixon Awards

Monday, June 15, 2015 by Christian Sinclair ·


How much does hospice help the surviving family? 

Sunday, June 14, 2015 by Christian Sinclair ·


Fear and Isolation of a Weak Immune System 
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.

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 ·


Big News: Pallimed Foundation and Pallimed Network



I am beyond thrilled that we made it to our 10th Anniversary. There were some times in the last few years I thought about shutting it down and simplifying things. But I was thinking only of Pallimed as a blog. Pallimed stopped being just a blog quite a while ago, but many (including me, until recently) may still think of it as only a blog. While the site is still the backbone of the work, the scope of the Pallimed brand has expanded greatly in the past decade. Understanding the behind-the-scenes support (tech, planning, editing) was largely dependent on my own individual volunteering, it was only last year when I realized that plan would not sustain Pallimed into the future. The writers and many contributors to the Pallimed effort have created something grand, and it needs to be able to stand alone as an organization. So this year, in our 10th anniversary, the non-profit Pallimed Foundation was established.

Introducing the Pallimed Foundation

With the establishment of the Pallimed Foundation, we recognize that there are many different aspects to what Pallimed actually does. The Pallimed Foundation will allow us to gather the resources to sustain the work we do into the future and not be dependent on individual volunteerism.

We are still in the planning stages for the Pallimed Foundation, so if you are interested in being a part of this new formal effort, please get in touch. Some basic ideas for the Pallimed Foundation include: becoming a formally recognized 501-c(3) organization so we can accept tax deductible donations, support overdue website and design upgrades, crowd-funding new content for Pallimed, supporting (through grants and coverage) unique real world and digital media projects focused on palliative medicine, reimbursing contributors for their writing and efforts, teaching social media skills to hospice and palliative care clinicians.

Some of you may be concerned about this addition of money into the equation. I assure you, true to our original mission, Pallimed website content will always be free to access and free of advertising. We are strong believers in the open access and Creative Commons movements. Our revenue model will be focused on donations, grants, crowd-funding and pay what it’s worth (PWIW). In the past 10 years, I have personally spent less than $4,000 on Pallimed efforts, but there have been countless opportunities that having established funds could have helped propel something to a new level of engagement. And that is a core tenet of what Pallimed is about: engagement. Introducing the Pallimed Network

If we have a funding model for long term viability, we also need an organizational approach and structure to the rest of our content creation, and so I am also introducing the Pallimed Network.

Below is the list of current nodes of the Pallimed Network. Some are current, some have lapsed and need to be rebooted, but altogether they can reach a potential audience of over 24,000 non-unique users with each post. In formalizing the Pallimed Network, we can begin to recruit and recognize dedicated volunteers who can lead these various efforts through advocating and scholarly activities.

If you are interested in helping on any of these efforts we are looking for leads and support. We will soon be introducing affiliates of the Pallimed Network as well as stand alone websites for the Pallimed Network and the Pallimed Foundation.

Pallimed Network Properties

- Arts and Humanities
- Cases
- Twitter - @pallimed
- Pinterest
- Periscope - @pallimed

#hpm chat
- Twitter - @hpmchat

National Hospice and Palliative Care Month*

Other Twitter accounts
- Health Care Chaplain @hcchap
- Hospice and Palliative Med/Care Education @hpmedu

*Pallimed Network does not own any rights to National Hospice and Palliative Care Month, but has maintained the page since 2010.

Thursday, June 11, 2015 by Christian Sinclair ·


The role for palliative care in gynecologic cancer treatment by Dee Sparacio and Christian Sinclair

This week's #hpm chat (June 10th 9-10p EST) we will be co-hosting with #gyncsm (Gynecologic Cancer Social Media) and discussing Palliative Care for women with gynecologic cancers.

We are so happy to be hosting a joint chat with the the #gyncsm community. Dee Sparacio (@womanofteal) and Chistina Lizaso (@btrfly12) are strong patient advocates. They have done a great job moderating this monthly chat since 2013 and have made #gyncsm into one of the leading cancer focused chats on Twitter. Read more about their past chats on the #gyncsm site.

One of the unique aspects of this chat will be the differences between the two communities. The #hpm chat tends to draw more clinicians as the core group, while #gyncsm has a much stronger patient driven community.

Our discussion will be guided by the following questions:

Palliative care clinicians will have a wide variety of experiences with patients who have gynecologic cancers, much of them largely dependent on the referral pattern of the doctors who primarily care for this group of patients.  Some places may encourage early access to help with symptoms and build relationships, while other centers may only see palliative care as helpful when goals are about to change (although hopefully this chat may help illuminate that narrow view.)  I was happy to find this open-access position statement from the Society of Gynecologic Oncology on palliative care and hope that any palliative care clinician reading this will click, save, read and then email to their GynOnc colleagues and invite them to tea so we can find common ground. Much like we will be doing in this chat this week!

For those not familiar with palliative care, you can read this fact sheet on palliative care from the NCI (@NCI) and this article from Cancer.Net (@cancerdotnet).

For this joint chat, include both #gyncsm and #hpm in your tweets.

We look forward to having you join our discussion or come and "lurk and learn".

Questions? Contact us at email@example.com or firstname.lastname@example.org

#gyncsm co-founder and co-moderator
#hpm co-founder and co-moderator What: #hpm / #gyncsm chat on Twitter
When: Wed 6/10/2015 - 9p ET/ 6p PT
Host: @WomanofTeal and @ctsinclair
Facebook Event Listing: https://www.facebook.com/events/400591026795240/

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 tchat.io, for ease of following and tweeting.

Chat Transcript and Chat Analytics can be found after that chat is over courtesy of @Symplur

Tuesday, June 9, 2015 by Pallimed Editor ·


Words matter: cancer and 'fighting' language


By Isaac Chan

Hers was the face of someone defeated by cancer. Our conversation was grim. She wanted to “fight,” to continue treatment. But there were no more options.

I vaguely remember speaking, feeling hopelessly ill-equipped. I, too, felt defeated. As a young physician and aspiring oncologist, I wondered: How do we prepare ourselves and our patients for these conversations?

Thankfully, I am not alone in struggling with this question. A new theme in medicine has emerged: how to talk about dying. As a field, oncology has been at the forefront of this movement. Some suggest making exposure to end-of-life encounters mandatory during medical school. Others stress creating systems and providing more resources for patients and doctors to encourage earlier planning for death.

But in order to facilitate and advance this difficult conversation, we must first change the very words we use to discuss cancer.

When the National Cancer Act was signed in 1971, our nation’s political and social will was focused on a “war on cancer.” Our widespread use of this language is rooted in a propagandist history promoting the belief that, with enough resources, this is a conflict we will win. Consequently, victory became defined only by “defeating cancer,” or finding a cure.

A visit to the American Cancer Society website asks you to join the “fight against cancer;” and a majority of public cancer-related media is packed with more war imagery. While the war description of cancer has resulted in unprecedented attention and fundraising for cancer care, research and survivorship, a balance should be reached between these successful efforts and language that is a realistic assessment of what can be accomplished today, for the patient, right now.

Cancer is a unique disease. To take the war analogy further, cancer is not a foreign agent infiltrating our bodies, such as an infection — cancer is a coup d’état, a tumorous growth from within us. One of the great paradoxes of cancer treatment is that targeting cancer inevitably means targeting our own bodies.

Yet because we conflate cancer and conflict, physicians and patients often find themselves in the midst of an unintentional civil war, fighting for life to the very end. We have inadvertently created a culture where death is considered a failure, and life extension equals life.

Words affect perception, and for some patients, a ‘cure’ is not always an achievable goal.
It’s time we changed our rhetoric. Words affect perception, and for some patients, a “cure” is not always an achievable goal. Choosing words that no longer focus on cancer’s destruction gives patients and physicians the freedom to engage in discussions about other treatments such as palliative care, removing the suspicion that any course other than “fighting to live” somehow means “giving up.”

So how do we make this change? As with most things in medicine, it begins with the patient.

Once faced with a cancer diagnosis, the physician’s temptation is to start the patient down a predetermined path of treatment. Instead, we should take a step back before pursuing the details of what to do next. A recommended but not often used script is to first ask the patient: What do you understand about your illness and what do you want to know? Who among your friends and family can provide support? What are your goals in life — both short- and long-term?

And while it creates a sense of camaraderie, we should avoid phrases such as “we will fight this” or offer vague hope. Rather, I caution patients with advanced cancer that therapy may be the life-saving option currently helping them achieve their goals, but there may come a time in the future when additional medical therapy will actually impede their enjoyment of life. This is akin to the technique of framing discussions in a way to hope for the best but prepare for the worst.

Physicians can guide patients through these discussions by involving palliative care specialists, whose role is to improve quality of life through symptomatic and psychosocial support. This support ranges from treating pain, insomnia, and anxiety to addressing spiritual needs and helping patients understand their disease and cope with related stress. Engaging their services soon after a cancer diagnosis has been shown to not only consistently improve survival, but also health literacy and other disease-associated outcomes, such as depression. Studies show that these effects even extend to patient caregivers.

However, a barrier to more use of palliative care is the misconception that palliative care and hospice are one and the same, that accepting palliative care means “surrendering” to the disease. While hospice focuses on end-of-life comfort, palliative care provides support throughout the spectrum of illness, from diagnosis to death. Once this concept is explained, palliative care is often more easily embraced.

How does one address a patient who feels terrified when told to “prepare for the worst?”

The result of having these exchanges and involving palliative care early in the course of the disease is to break the false dichotomy between cure and failure. This strategy broadens the patient’s and physician’s ability to receive and provide care. But these are very difficult conversations and are filled with fear and anxiety. How does one address a patient who feels terrified when told to “prepare for the worst?” It is crucial for a physician to normalize these conversations, perhaps by saying “I discuss this with all my patients who face a serious diagnosis,” and then to provide reassurance that their patient will receive comprehensive medical care, whether it is curative, palliative, or both.

As physicians grow to embrace a more holistic view of cancer treatment, the public discourse surrounding death and disease must also evolve. Online tools such as “Let’s Have Dinner and Talk About Death” are a step in the right direction. Ending the “war on cancer” is another.

Let’s stop the talk of battles and instead raise awareness by celebrating the remarkable stories of those who succumbed to cancer and those who are currently living with cancer. As one of my patients eloquently told me, “Death is not a threat but the condition that maximizes my life.” Our medical interventions, while powerful, are not the only way to maximize life. And partnering with my patients to figure out how is the best part of my job.

Isaac Chan, MD, PhD, is a resident in General Internal Medicine at Boston Medical Center.

This post was originally published on WBUR's Common Health blog and is reprinted with permission of the author and WBUR.

Image Credit: The Battle of Quiberon Bay, 21 November 1759, by Richard Wright

Monday, June 8, 2015 by Christian Sinclair ·

Pallimed 10th Anniversary 2005-2015 By Christian Sinclair

It is quite amazing how far we have come with digital media tools. In 2005, YouTube had just started and was in public beta, Facebook, had just changed from thefacebook.com to facebook.com and was still mulling the decision to let in more than just elite college students, and Twitter, Tumblr, Instagram and Pinterest didn't even exist.

Back in 2005, when Drew Rosielle started Pallimed, blogs were beginning to enter the mainstream as a form of participatory journalism. With more free publishing tools at your disposal, you could spend an hour or two writing an opinion or analysis and instantly share it with everyone with the click of the publish button. Blogs were really the beginning of modern social media since their rise in popularity in the early 2000's and they had a fairly strong base in medicine.  Kevin MD, The Cheerful Oncologist, DB's Medrants, Respectful Insolence, Dr. Wes, Intueri, Clinical Cases and Images, Emergiblog and others helped give a voice to clinicians in the field who wanted to teach and share what they were seeing. Some of those blogs have closed, some have moved to more formal media sites. Not many blogs last 10 months, let alone 10 years. It is exciting to see Pallimed is still here after 10 years.

As the Editor of Pallimed since 2010, I have learned so much from the 70+ writers who have contributed to this site. Pallimed has really become a crowd-sourced endeavor through writing contributions. Many, many heartfelt thanks to them.  If you know one of them, please feel free to buy them a coffee, or write them a nice letter

Looking forward to the next ten years we have a lot more we can accomplish as a group.  Over this week, we will be announcing a few new initiatives which will help us build a better resource to share great information from clinicians, researchers and advocates seeing the great impact of hospice and palliative care every single day.

But today let's just celebrate all the efforts of those who write, share, read, comment, like, and tweet about hospice and palliative care.  Many hands make light work.

A few people you may know wanted to share some kind words about what we have been able to accomplish here at Pallimed.  If you want to share your own feelings, please comment below. “Actually, I can’t believe Pallimed is only turning 10. It’s hard to remember a time before Pallimed. I feel like I’ve been reading the insightful, knowledgeable, and sometimes hilarious blogging at Pallimed my whole life. Medical literature has become so arcane. Authors write in “researchese” (the language of researchers) to satisfy editors. This makes it so much harder for practicing clinicians to read. But Google search any topic in palliative care and you’re almost inevitably going to get a Pallimed post that you will want to read first. Pallimed breaks down research papers into clear, plain, English the practicing clinician can understand. They address that all important question, “How will this effect my practice?” And they have a great time doing it. More than the posts, Pallimed has become doorway into a larger community of people who are passionate about using Social Media to transform the care of people living with serious illness. Pallimed isn’t just a blog anymore. It’s a movement." - Alex Smith, MD, MPH, at UCSF, GeriPal co-founder

Pallimed is a trusted source for news, commentary and analysis of issues involving care at the at end of life that is invaluable not only for hospice and palliative care professionals, but for all those interested in the health care continuum. Pallimed also engages in digital dialog that is timely and useful – it’s a site everyone should save as a favorite."- Don Schumacher, PsyD, President and CEO of NHPCO

"From the funny to the serious, Pallimed posts have served as an inspiration for the hospice and palliative care community, particularly on how to educate and advocate outside of the standard academic publishing route. Pallimed was a model for us to develop our own blog and it’s editors have been a source of expertise in how to enter into the world of social media. My only concern about the future of Pallimed is their questionable judgment when picking teams to bet on in the World Series…" - Eric Widera,  MD at UCSF, GeriPal co-founder

"10 years ago, Pallimed created a new vehicle and voice for Hospice and Palliative Medicine. For the first time, ideas, issues, perspectives and timely topics were accessible to all. It remains innovative, introspective and simplistic. Pallimed has also introduced us to emerging thought leaders and even social media. It has been exciting to see this online resource evolve and expand. Congratulations to everyone involved in Pallimed for your amazing achievements and contributions over the past decade!" - Steve Smith, MS CAE, Executive Director/CEO of AAHPM

"Every community needs places to meet, comfortable venues where people can share concerns, debate opinions, and, sometimes, come up with creative approaches. Pallimed has become one of those places. Not unlike a favorite neighborhood coffee shop it’s a daily venue for people to exchange ideas – from formal to fanciful – essays, scientific tidbits, photos and video clips, nuggets of poetry, narrative, and humor. The dialog it hosts knits us together and advances our field. At this point, it’s hard to think of the hospice and palliative care community in America without Pallimed." - Ira Byock, MD, author of The Best Care Possible and The Four Things That Matter Most

"Pallimed has not only been a #SOCmed leader in #hpm, but a leader in #HCSM! Congrats on the 10th anniversary!" - Jim Cleary, MD at Univ of Wisconsin via Twitter



AAFP opposes funding for Hospice and Palliative Medicine fellowships


by Gary Buckholz

I practice full time palliative care, but I am also a strong advocate for family medicine and primary care. I volunteer a significant amount of my time serving on the Family Medicine Review Committee for the Accreditation Council of Graduate Medical Education (ACGME). While most family physicians don’t specialize, the American Board of Family Medicine (ABFM) offers Certificates of Added Qualification (CAQ) in some areas of medicine. Hospice and Palliative Medicine (HPM) and geriatrics, for example, are natural extensions of family medicine. Twelve years ago I pursued HPM training directly after family medicine residency training, however family medicine continues to serve as the foundation for my palliative medicine practice. As many family physicians say—“once a family doc, always a family doc”. I suppose this is also why I will always need to maintain my board certification in family medicine in order to maintain my CAQ in HPM.

When the Institute of Medicine (IOM) report on Graduate Medical Education (GME) financing came out last year, I agreed with the recommendations and thought to myself that primary care specialties as well as the subspecialties of HPM and geriatrics stand to do well if these recommendations are implemented. Dr. Kyle Edmonds nicely summarized the details of the IOM recommendations and the context for HPM.

The American Academy of Family Practice (AAFP) took advantage of this report and released a document or position statement on GME financing as well: Aligning Resources, Increasing Accountability, and Delivering a Primary Care Physician Workforce for America This release came with additional supporting documents:

These documents describe how family medicine meets the needs of our population in the context of a shortage of family medicine physicians. They advocate that GME financing should align with the needs of the population rather than hospitals. I completely agree with that!

However within these documents, the first of five recommendations is to “Limit payments for direct graduate medical education and indirect medical education to training for first-certificate residency programs.” Interpretation = Don’t fund fellowship programs (including HPM and geriatrics). I was extremely disappointed to see the wording of this specific recommendation. Are HPM and geriatrics really in a significantly different ballpark as compared to Family Medicine? The ABFM offers CAQs in both of these fields. HPM and geriatrics have documented significant shortages of trained physicians and both meet the needs of our aging population. Both view and care for the patient in the context of their family and the community. You might argue that HPM and geriatrics don’t provide primary care, although the geriatricians I know provide primary care for the most complex patients and when I worked for a hospice, I assumed primary care (at the request of the referring physicians) for many of the most complex patients. Additionally, HPM and geriatrics fall in line with family medicine when it comes to the goal of increasing value and the triple aim of better care, better quality, and lower costs. When compared to family medicine, there are many similar goals and quality outcomes for our patients. However, HPM and geriatrics require additional training because there are additional skills needed for our patients that are not taught within family medicine (or other primary care) training programs.

The AAFP statements ignored recommendations from an IOM report in 2008: Retooling for an Aging America: Building the Health Care Workforce. And ironically, the same month the AAFP released their statements, the IOM released another important report: Dying in America: Improving Quality and Honoring Preferences Near the End of Life. This important report calls for a number of changes to enhance our population’s quality of life and contribute to a more sustainable health care system. In addition to calling for general palliative care skills to be required for training of all clinicians caring for advanced serious illness (including primary care training), the report calls for increasing the number of and funding of HPM fellowships.

The AAFP statements say that subspecialties don’t need funding for training programs because subspecialist trainees are allowed to bill for their services. This is incorrect. GME departments that support training programs do not allow subspecialist trainees to bill due to Centers for Medicare and Medicaid Services (CMS) scrutiny. Since GME departments receive federal funding for some training positions and provide some level of support to all training positions, they do not allow any trainees to bill. CMS policies would need to shift significantly for this to change.

Why then, as the AAFP statements point out, have many fellowship programs developed since 1997 that don’t get financial support from Medicare? These programs depend on funding through private-sector philanthropy or institutional support (departments or hospital budget). Just over 100 mostly small HPM fellowship programs in the United States have scrapped together money in this fashion. Unfortunately that does not come close to meeting the workforce needs of our population.

I am aware that some family medicine residency positions have also been funded without government Medicare funds (over the cap). However, that does not mean it is a sustainable model to grow family medicine to meet workforce needs. While this isn’t a good model for family medicine, HPM, or geriatrics, it might work for some subspecialties with higher department budgets and faculty billing revenue.

A friend of mine who is a Family Medicine Residency Program Director had trouble understanding my dismay regarding the AAFP position. She said, “Well, can’t HPM develop their own advocacy for GME funding separate from family medicine?” The simple answer is “sure”, but it doesn’t make sense to me that any advocacy will be in direct opposition to AAFP. Additionally the AAFP stance is currently one that isolates family medicine instead of building strategic partnerships.

The American Academy of Hospice and Palliative Medicine (AAHPM) and American Geriatrics Society (AGS) are doing important work to grow and retain the HPM and geriatric workforce. A number of collaborative efforts have been undertaken around education and advocacy including a joint outreach to AAFP with AAFP holding firm on their stance for now.

For those of you who are family physicians, I encourage you to reach out to AAFP and tell them how you feel about these position statements and specifically the wording of their first recommendation. I hope there will be a shift over time. It makes sense that AAFP would be a partner in advocacy to meet the needs of our current and future patients and their families. Please leave your thoughts here as well.

American Academy of Family Physicians
Telephone: 800-274-2237 Fax: 913-906-6075
P.O. Box 11210
Shawnee Mission, KS 66207-1210

Gary Buckholz, MD, FAAHPM is an Associate Clinical Professor at UC San Diego and part of the Doris A. Howell Palliative Care Service. He co-directs the UC San Diego and Scripps Health HPM Fellowship Program. These are his personal opinions and may not represent the views of UC San Diego, Scripps Health, AAHPM or ACGME.

Friday, June 5, 2015 by Christian Sinclair ·
