Tuesday, May 10, 2016

Tell Me a Real Story

by Staci Mandrola

Charlotte is three and a half years old. She loves stories. I tell real stories. John tells made up stories. The first words we hear when Charlotte walks in the house are “Tell me a story, PaPa!”

Stories put me on a path more than 40 years ago. The path to being a doctor and then a hospice and palliative medicine doctor. I listened to my grandmother tell stories about her physician father leaving the house to check on a woman in labor or a dying patient. He might not return for days. His payment ranged from a chicken to a milk cow to a beat up John Deere.

I listened to my dermatologist father tell the story of a woman who wiped herself with poison ivy leaves after peeing in the woods. He told my three siblings and me that it’s always best to drip dry when camping if you can’t verify the exact nature of your toilet tissue.

I listened to my teachers in medical school, physicians with years of experience, tell patients’ stories to ensure we would not repeat their mistakes. One of my favorite came from an internist who taught me during my second year. A patient nearly bled to death from an AVM in his bowel which had almost certainly been bleeding for days. The internist asked the patient why he didn’t seek help when he saw the blood in his stool. The patient replied that he never looked at his stool, that was disgusting. I can still see the internist shaking his head, admonishing us to never flush before we inspected our own stool.

I am reading Internal Medicine: A Doctor’s Stories by Terrence Holt, MD. It is an evocative book about medicine residency that had my long-dead intern-year butterflies swirling by the second page. In his introduction, he details how difficult it is to tell a patient’s story without identifying that person. It’s “not enough to respect the patient. As long as there’s an actual, unique individual beneath that disguise, you’re making a spectacle of somebody’s suffering, and that’s a line no one should cross. It’s bad for the patient. It’s not good for you the writer, either.”

I would argue that it is essential to continue our story telling in medicine. And that they are real stories about real people because that’s who we treat. We don’t treat made up people with made up diseases. We get KUBs to diagnose constipation because many don’t examine a belly anymore. We may be one step away from putting made up stories in the chart because that’s the only kind of story we tell students.

The cautionary tale I emphasize in my opioid management talk illustrates why you shouldn’t use methadone unless you’ve had special training in how to do so safely. He was a 60-year-old with head and neck cancer, he had weeks to months to live and he had neuropathic pain refractory to other opioids and adjuvants. I started a rapid rotation in the hospice inpatient unit. I stayed just inside the published guidelines for methadone titration in severe pain. He stopped breathing at 3AM and required a naloxone drip and transfer to the MICU for 24 hours. He did well on a lower dose of methadone and lived for 6 more months with good pain control. I tell the residents that methadone will bite you in the ass. It hasn’t bitten me since but I learned from his story and I pass it on. I don’t say his name but it’s him. He is imprinted on me.

I tell my own story about when I fell off my mountain bike and broke my hip in two pieces. I took 5mg of hydrocodone each of the three night until I had my total hip replacement. That was enough. Then 12 hours after surgery, when the bupivacaine liposomes wore off at home, I was trapped in a red bubble of pain and misery. I took that same 5mg of hydrocodone times four tablets, a meloxicam and an aspirin. It’s no wonder people take too much Tylenol and get into trouble with their pain control.

I have cared for people with issues that are hard for others to look at. One family struggled with their loved one’s cancer that was visible from the outside. A sister cried every time she saw it. A brother became physically ill. They asked me if this was the most awful thing I had ever seen (their words)? I told them there is nothing the human body can do that is too awful for me to look at, to touch or to comfort. I told them the stories of three other people who had cancers that were visible and the ways that they, their families and caregivers were able to cope. They expressed their fears, found common ground in the stories of others and moved forward with the care of their loved one.

Stories are what sustain and inform our profession; they inspire, they instruct, they give comfort. They should be real stories. I ask every patient and family if I may share their story. None have yet told me I may not. Stories brought me to medicine and keep me in medicine. Real stories.

Dr. Staci Mandrola is a wife, mom, grandma and palliative care doc working as part of a super awesome team at the Robley Rex VAMC.

Image credit: "A Story Book comes to life" by ClaraDon via Creative Commons BY-NC-ND

(Ed note: Link to Internal Medicine: A Doctor's Stories by Terrence Holt MD is an Amazon Affiliate Link to help support Pallimed's not-for-profit and volunteer efforts.)

Tuesday, May 10, 2016 by Christian Sinclair ·

Monday, May 9, 2016

Beyond the Primary Caregiver: Supporting the Other People in a Palliative Patient’s Circle

A conversation between two specialists
by Allie Shukraft and Lizzy Miles

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 addresses systems theory and how we can provide support for additional people in the palliative patient’s life, beyond the primary caregiver. This is the fifth article in a series of joint conversations about the similarities and differences with pediatric and geriatric specialty populations. (Read the other posts: Developmental Life Cycles, Social Work Research, End-of-Life Decisions, Getting Started).

In many articles about hospice and palliative care, there is an additional emphasis placed on supporting the caregiver in addition to the patient.  In our work with patients, we are often asked to identify the “primary” caregiver so as to have a point person for our communication. We know, though, that there are often many more people in a patient’s life that are affected by their terminal disease. Often we have face to face encounters with these additional loved ones. This article intends to identify the types of additional people we often see in pediatric and geriatric settings, and provide suggested interventions on how we might be able to practically provide support.

First and foremost though, let’s talk about the primary care provider in each respective specialty.

Allie: In the pediatric world, many of the conversations and even interventions are aimed at the parents who tend to be the primary caregivers for palliative care patients. Whether this is one person or more depends on many factors: are the biological parents married or even together in a romantic relationship? If they are not together, are they amicable and choosing to co-parent? Are both birth parents alive and are they both of age to consent (this varies by state)? Are there additional significant others in their lives, such as other spouses who are now step-parents? Is the patient adopted or in DSS custody? Are the primary caregivers foster parents, extended family members providing care for one of a number of reasons, or is the primary caregiver some other person who has informally assumed a role in this child’s life? Although it can be uncomfortable to ask these kinds of questions (for example, I have learned by trial and error to ask vague questions such as “how are you connected to this child?” rather than assuming questions such as “are you Grandma?”).

It is important for several reasons to assess these relationships. The medical team needs to know who is caring for the child, that the adults in the room are capable of and legally entitled to make decisions for the child (and receive medical information from the team), and that the child will be safe and well cared for upon discharge. We now live in a world where, increasingly, family is defined by the systems in which the children operate, rather than by biology.

Another thing to consider in the pediatric world is the patient’s age. Although our typical patient is 18 years of age or younger, we sometimes are able to extend our services to older patients because of their diagnoses or the duration of their treatments. For example, many pediatric oncology or cardiology programs will follow patients with pediatric diagnoses well into their twenties. For these patients, their own significant others often take over as primary caregivers, sometimes in conjunction with the patient’s parents, sometimes on their own. This can put a huge strain on a young relationship which, as many of us may remember from our early twenties, likely faces many challenges already.

Lizzy: To begin with, the age range for someone who is considered a geriatric patient is expansive – covering more than forty years, if you define geriatric as over the age of 65.

The nature of the relationship of primary caregivers we see with the geriatric population are widely varied. The primary caregivers who are family members might include: spouse, sibling, sibling-in-law, child, child in-law, niece, grandchild, great niece, great grandchild, ex-spouse, ex daughter-in-law.

Other than family members, primary caregivers can include: friends, lawyers, professional care managers, and guardians.

One might assume that younger patients are more likely to have a caregiver that is a spouse, but I have had many patients in their nineties whose primary caregiver was a spouse who was also in their nineties. You can also have a geriatric patient whose caregiver is their parent. It is less common.

Let’s now identify the peripheral people that we come into contact with in our day to day care of the patient.  

Allie: In the pediatric world, this typically encompasses grandparents and siblings, with extended family, church community members, and members of other systems in which the patient participates (which may include school staff and classmates, teammates, scout troop members, and various other communities). Although these people likely care about the patient a great deal, many of them have never gone through a child’s serious illness before so they often benefit from guidance of some kind. The type of guidance varies, but often having a specialist such as a Child Life Specialist or a Chaplain or Social Worker speak to these people about what is helpful and what feelings are normal can be beneficial.

Although the patient and the identified immediate family are likely the ones hit hardest by the illness, others will feel it too, and they may be unaware of how their experience differs from that of the immediate family or what they can do or say to be helpful. To be fair, when faced with someone else’s pain, it can be difficult for anyone to “just be there” as we often want to provide comfort or “fix things” in some way. Phrases that are intended to be helpful in this way (such as “well at least . . .”, “stay positive”, or “everything’s going to be fine”) can actually serve to minimize the patient’s experiences and can damage trust and even end relationships.

Lizzy: For elders, it may depend on how social the elder was and how many organizations or communities the elder knew. Obviously, there can be other family members besides your main contact. These other family members may be all the ones that are listed in the primary caregiver section above. In addition to family it’s powerful to see how many other people can show up to visit the patient. When there is a revolving door of visitors, you know this patient is going to be highly missed.

If a patient lives in a long term care community, there are two main groups of visitors beyond family and friends: other residents and facility staff members.

If a patient lives at home, the additional people you might come into contact with are: fellow congregates from their church, former co-workers, friends and neighbors.

Supporting the network: Start with gathering information

Lizzy: The first thing to do is to have a conversation with the patient and with the primary caregiver about who is the most important of their family and friends.  Sometimes you learn that simply by who is present during the admission.  I have admitted patients to hospice with an audience of 10 people in the house. Everyone wanted to hear the information that was being provided.

Many hospice admission packets ask about information disclosure. When you are covering this information and they get fatigued by trying to list everyone they can think of, including in-laws, you will get an idea that they have a large, open system.

Suggested Intervention: Ask the patient, “Who is most important to you?”

Supporting the network: Traffic control

Allie: One of the things that any pediatric nurse worth his or her salt will do is take on the role of the “bad guy” and limit visitors, whether this is because of hospital policy or patient or parent wishes. One thing that many people don’t realize is how much energy being sick or taking care of a sick person can use up. Whether you are active all day or just spent most of the day sitting there, watching your baby who is too sick to hold, all of the conversations you have had with staff and family, as well as all of the worrying and the stress of life with illness can take a toll. As professional caregivers, it can be helpful for us to suggest limiting the number of people in the room with the patient, keeping visits short, or even turning people away who are not needed or when someone in the room is sleeping. Depending on the circumstances, this can mean staff as well as visitors and even close family and friends. Sometimes a patient or parent need our permission to do this; at other times, they need us to step in and limit visitors or turn people away. I have had parents tell me that they would not turn people away because it would feel rude but then beg us to keep everyone out. It is also important that we do not ask the caregiver or patient in front of the visitor if they are allowed in. This places the power back on the patient or family, rather than the staff member.

Lizzy: It is not our responsibility to decide who should visit and when. Our role is to support the patient and family to ensure the visits are helpful and wanted. We need to encourage the patient and caregiver to set boundaries if they are tired or do not feel up for visits. They might be exhausted and not know how to defer visits to another time. We can offer suggestions for how the caregiver might manage the visitor schedule. Understand that it is not uncommon for caregivers to choose not to send people away even though they are tired…and that is okay as well.

Suggested intervention: Provide suggestions to caregivers for what to say to defer visitors (if desired) and/or how to set up a visit schedule.

Supporting the network: Emotional support

Allie: At times in the pediatric world, visitors can feel like they don’t know what to do or say, and they may struggle with feelings of inadequacy as a support or like their role in the child’s life is unimportant, possibly because they are given that message by the patient who might ignore them or have low energy, or perhaps the parent did not acknowledge them as they expected. It is important to thank anyone who visits while you are there and acknowledge that it can be difficult to know what to do or say and that their time shows they care. It can also be helpful to offer them the same presence that you would offer a patient or family. Offering a silent, safe space for these visitors can allow for them to share about whatever they are feeling or thinking about. Possibly they are burdened by a “normal” life problem that they feel they cannot share with the parent. Perhaps they are feeling that their own relationship with the patient has been devalued because s/he is not their child, but perhaps still holds a significant role in their lives that you can acknowledge and validate without criticizing the parent for how s/he is handling it.

Lizzy: If we are present when the patient has visitors, one of the best things we can do for the visitor is to acknowledge their relationship to the patient. If the patient is non-responsive, our role may be one of education. We can inform the visitor of the patient’s ability to hear. We can give them suggestions for what they can do for the patient, such as apply washcloths to forehead, sing, tell stories or pray. We can facilitate storytelling and life review by asking questions. We do have to be careful about the information we provide if the visitor is asking questions and they are not on the approved HIPPA list. Even if we do not talk about patient condition, we can give general information about symptoms that the visitor observes.  If the visitor brings food for the patient, we might provide general educational information about how the patient may not have an appetite.  Finally, we can inform the visitor how to access bereavement services if they are desired.

Suggested interventions: Acknowledge the visitor’s feelings and allow space for them to explore what they need from you and how you might meet these needs without taking away from the family.

More social work posts on Pallimed

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. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW


Monday, May 9, 2016 by Lizzy Miles ·

Wednesday, April 27, 2016

Measures that Matter in Advanced Illness Care

by Meredith MacMartin

I was drawn to the field of palliative care by something subjective, the feeling of deep satisfaction from providing goal-aligned care for my patients, and the desire to do that better. In training, I came to realize that while much of our work lies in the qualitative realm, the key to doing it better lies in the underlying structure and frame of good communication, symptom management, and care coordination. It is no surprise to me, then, that palliative care is embracing the increasing emphasis on healthcare quality and value; in other words, the quantitative measures that underlie the qualitative experience of our patients and families. I was gratified to see the number of sessions at this year’s AAHPM Annual Assembly that were focused on this topic, and was especially interested in the discussions around the less easily measured aspects of the care that we provide. Many of the metrics that have been tracked and reported in the palliative care field have focused on expenditures and resource utilization, and I for one have struggled with how to collect and organize data on the actual quality of the care I’m providing.

So what does high quality palliative care look like? How do we measure quality of life parameters in an efficient and meaningful way? How do we measure the alignment of a patient’s care with his or her goals? How do we measure the ways in which we impact their experience of advanced illness?


Please join NQF's National Quality Partners and the Coalition to Transform Advanced Illness Care (C-TAC), co-hosts of the Wednesday, April 27 (9 pm-10 pm ET) #hpm TweetChat, "Measures that Matter in Advanced Illness Care."  

TweetChat topics:

*             Q1 What is the most important aspect of care delivery that you or your organization currently measures to assess quality #hpm?

*             Q2 How are quality measures integrated into staff performance evaluations & to whom do they apply (leaders, nurses, chaplains, etc.)?

*             Q3 What do individuals & their families see as the most important marker of quality #hpm care?

*             Q4 If you could identify one measure to capture overall #hpm quality, what would it be?

*             Q5 If you could add one policy that would improve the delivery of #hpm, what would it be?

#hpm TweetChats take place every Wednesday at 9 pm ET and began in 2010 to bring people together to discuss a broad range of hospice and palliative medicine topics, learn from interdisciplinary perspectives, and empower everyone to become advocates for high-quality advanced illness care.

Supported by The Research Retirement Foundation, this TweetChat builds on an NQP initiative to promote high-quality care for adult patients of all ages with advanced illness. NQP and C-TAC are working together to galvanize diverse stakeholders to action and maximize their collective impact.

Meredith MacMartin is a palliative care physician at Dartmouth-Hitchcock Medical Center (@DartmouthHitch) and @GeiselMed. She is also one of the moderators of #hpm chat.

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 4/27/2016 - 9p ET/ 6p PT
Host: NQF’s National Quality Partners  and Coalition to Transform Advanced Illness Care

 and go to www.hpmchat.org for up to date info.

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. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

For more on past tweetchats, see our archive here.

Wednesday, April 27, 2016 by Meredith MacMartin ·

Monday, April 25, 2016

Making Palliative Care Stand out on Capitol Hill - Apr 27 - Virtual Lobby Day

by Christian Sinclair

Sure all this political smack talk in a presidential election year has probably got you a little bit jaded and tired. Yet, you have a chance to make a difference in lives of people you will never see by helping solidify the foundation of education and training for palliative care and hospice.

This Wednesday April 27, 2016 is designated as the Virtual Lobby day for PCHETA (Palliative Care and Hospice Education and Training Act). On Wednesday, advocates from over 30 different organizations are working together to tell their legislators about PCHETA and why it should be supported in both the House and the Senate. The AAHPM is one of the lead organizations on this of course, and they have a great guide to help you through the process in addition to their easy to use legislative action center.

I have participated on behalf of AAHPM in two Hill days, where I have visited my Kansas legislators in person. The experience opened my eyes to the importance of telling our stories of palliative care and hospice, because if we don't there are plenty of other people waiting to talk to your Senators and Representatives. The National Stapler Union, The Coach Bus Drivers Organization, and others. If they care enough to tell their stories and needs, shouldn't we advocate for our patients and families as well?

Some simple things you can do after you first become familiar with the bill:

  • Copy this post and send it to your peers in the field!
  • Print off the AAHPM Virtual Lobby Day FAQ and bring it to team!
  • Mark your calendars for Wed April 27th so you do not forget! 
  • Post a message of support on Facebook, Twitter, Instagram, Tumblr and include some of the following hashtags: #PCHETA, #HR3119, #S2748, #hpm and tag your legislators! Email works too!
And don't worry if you miss Wednesday - just get anything in this week to make sure it fits in with the buzz.

We have a great social media presence as hospice and palliative care professionals. So let's put this social media army to some good use and join in on Virtual Lobby Day.

Christian Sinclair, MD, FAAHPM is the editor of Pallimed, president of the American Academy of Hospice and Palliative Medicine and no longer skeptical of the democratic process.

Monday, April 25, 2016 by Christian Sinclair ·

Monday, April 18, 2016

"Why (not) me?" Why doctors do it differently......

by Michael D. Fratkin MD


I am preparing for a presentation named in memory of a man I never met, Thomas Chippendale, MD. The organizer gave me some basics…well respected brain scientist and neurologist at Scripps and pioneer in the area of mindfulness with his wife, Julie Lawrence ChippendaleWanting more material on his personhood, I reached out to Julie. In the hour video-call, she painted a picture of a man that embodied kindness and purpose with every breath he took and in all the choices he made in relationship to his illness and approaching death. Choosing substantially less cancer-directed treatment and much more intentional life-affirming person-centered experiences than the average, Tom’s path reminded me of Ken Murray’s essay, “How Doctor’s Die.”

In that essay, Dr. Murray outlines his observation that while doctors working within a fragmented, high paced, and extremely expensive medical service delivery system will facilitate aggressive and high cost : low value interventions for their patients, they tend to choose home-based care focused on well being and the well being of those they love when they are sick.

According to a Stanford study led by VJ Periyakoil, “Most physicians would choose a do-not-resuscitate or “no code” status for themselves when they are terminally ill, yet they tend to pursue aggressive, life-prolonging treatment for patients facing the same prognosis..” In this study, almost 90% of surveyed physicians, presumably healthy, would forego resuscitation efforts for themselves.

In our next #hpm chat, on Wednesday, April 20th, 2016, let’s unpack this head-scratching situation together--not just for doctors, but for all of us…nurses, social workers, chaplains, program folks… that have reason to think differently about the nature of modern dying and our desired intensity of medical treatment.

  • Topic 1: What do you think about those of us in healthcare, with knowledge about the limitations of modern medicine, choosing less of it?  
  • Topic 2: What is your belief and / or perspective on our healthcare system often inflicting harm rather than delivering value?
  • Topic 3: What explains the disconnect between what healthcare practitioners know & what the public expects? How might we bridge that divide? 
  • Topic 4: How does your belief about the success or failures of the healthcare system influence your practice?  


Michael D. Fratkin, MD @MichaelDFratkin is a Father, Husband, and Palliative Care physician pioneering from far Northern California with soulful technology enabled person centered care in the home. With an incredible team, he is building ResolutionCare and changing the rules as he goes.

What: #hpm chat on Twitter
When: Wed 4/20/2015 - 9p ET/ 6p PT
Host: Michael D. Fratkin MD Follow @ResolutionCare

For more on past tweetchats, see our archive here and go to www.hpmchat.org for up to date info.

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. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org


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

Monday, April 18, 2016 by Niamh van Meines ·

Tuesday, April 5, 2016

A Rose by Any Other Name...Complimentary Therapies in Palliative Care

by Susan Thrane, RN, PhD


Non-western, non-medical, non-allopathic
modalities have been called by many names: 
  • complementary and alternative medicine (CAM), 
  • integrative, 
  • supportive, 
  • adjuvant, 
  • placebo and 
  • hooey just to name a few. 

Whatever you call them (I prefer complementary or integrative), modalities such as massage, yoga, aromatherapy, guided imagery, meditation, energy therapies such as Reiki, Healing Touch, Therapeutic Touch, or creative art therapies (these include dance/movement, art, and music therapies provided by a trained therapist) do require training for the person providing the therapy. 

For Children....
Playing video games, listening to music, virtual reality programs, coloring, or any craft activity can also be helpful for symptom management for children and adolescents. 

For Infants.....
Modalities helpful for symptom management for infants include kangaroo care (skin-to-skin contact) swaddling, holding, rocking, breastfeeding, sucking on a pacifier, or a combination of these.

Generally speaking, these therapies don’t stand alone in the symptom management realm; they are most often used in addition to medications for symptom management. What these modalities bring to the palliative care table is a way for children and families to have fun and to participate in their own care.

By providing access to integrative therapies, we can help manage symptoms and increase the child and family quality of life. Offering complementary therapies allows children to manage symptoms without additional medications that come with side effects that may interfere with play and family time.

What do you think?

  • What are your thoughts on the use of complementary modalities in pediatric palliative care?
  • Do you think there is benefit or harm to any of these modalities?
  • Does your facility use any formal complementary modalities? What about informal modalities such as crafts, coloring or listening to music through headphones?
  • Are there any you would like to try in your setting?
  • Have you tried any of the modalities listed for self-care?
  • What do you think about passive (massage, energy therapies, aromatherapy) versus active (yoga, guided imagery, meditation) modalities?


Join us for a lively discussion of complementary therapy use in pediatric palliative care!

What:  #hpm (hospice and palliative medicine/care) chat on Twitter. Also use #pedpc (pediatric palliative care)
When: Wednesday, April 6, 2016. 9pm ET / 6pm PT
Host: Dr. Susan Thrane (@sthrane)


Dr. Susan Thrane is a PhD prepared nurse researcher from the College of Nursing (@osunursing) at The Ohio State University (@OhioState)

For more on past tweetchats, see our archive here.

 and go to www.hpmchat.org for up to date info.

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. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

photocredit: indulgy.com

Tuesday, April 5, 2016 by Niamh van Meines ·

Friday, April 1, 2016

Physicians Recieving Botox Score Lower on Empathy and Patient Satisfaction

by Abe R. Feaulx, Pallimed Special Reporter



Researchers published a new study in JMAC (The Journal of Middle Aged Concerns)  reporting interesting findings related to a recent study on the effect of various anti-aging cosmetic procedures on providers’ ability to emote empathy to patients and families.



Providers in the study were randomized into two groups: one group received injections of an inactivated toxin commonly used as a facial muscle paralytic into their foreheads, while the second group received placebo injections. Over the course of the following month, the providers were scored, by their patients, on how well the patients felt the provider expressed empathy and compassion. Results were...surprising.



In the intervention group, providers who had previously received very high scores for their patient empathy prior to receiving the injections, saw their empathy scores decrease. One patient commented, “Dr J used to always let me know she knew what I was feeling just by the worried look on her face. Now she just always looks surprised by what I tell her. It’s like she hadn’t ever heard that I had stage 4 cancer.”



Although empathy scores were lower, patients did make note of other findings. “It seems like Dr. B is so much happier these days. It’s like he finally started following his own advice about getting sleep and taking care of himself. He looks AMAZING!”


Check out more surprising reporting from Abe R. Feaulx on Pallimed.

Friday, April 1, 2016 by Abe R Feaulx ·

Wednesday, March 30, 2016

CDC Chronic Pain Guidelines: Not so bad, but...

by Tom Quinn

In case you didn’t notice, the US Centers for Disease Control published their long-awaited (dreaded?) “CDC Guideline for Prescribing Opioids for Chronic Pain.” It made a pretty big splash: Five editorials plus the full Guideline in the online Mar 15 JAMA, front page New York Times feature article, the first hour on NPR’s “Diane Rehm Show,” (Mar 17) and multiple others. It is specifically aimed at primary care prescribers, who write about half of the scripts for opioids in the US. It is intended to “support clinicians caring for patients outside the context of active cancer care or palliative or end-of-life care.” The Guideline was published in the Mar 15 Weekly Morbidity and Mortality Report and is the first US Government guideline to address treatment of chronic pain; it is 52 pages long. A good “Cliff Notes” version of the Guideline is the JAMA piece by CDC Director Thomas Frieden, MD and Debra Houry, MD.

I should point out that the document was prepared by the CDC’s Division of Unintentional Injury Prevention. The Guideline is intended to address the epidemic of opioid-related deaths, not the pandemic of chronic pain. On its face, the Guideline promotes good, standard prescribing practices, especially for potentially high-risk agents: history and diagnosis of the painful disorder, prognosis of the painful state, history of prior interventions, establishing clear treatment goals, careful selection and implementation of treatments based on patient informed consent and risk-benefit discussion, and close follow-up with scheduled re-evaluation of the condition and effects of the intervention. Appropriately, the Guideline states that “nonpharmacologic therapy and nonopioid pharmacologic therapy are preferred for chronic pain.” The Guideline focuses on chronic pain, but points out that many prescriptions begin for acute pain. For acute pain, the lowest effective doses of opioids for the shortest possible course (3 days or less; “more than 7 days will rarely be needed”) should be used.

Additional risk-management strategies for opioids include: using short-acting opioids at the commencement of treatment; avoid concurrent benzodiazepine prescribing; evaluate patient history of substance misuse; use the state prescription drug monitoring program (PDMP); do initial and periodic urine drug screening.

“Higher” opioid doses are defined as those greater than or equal to 50 morphine milligram equivalents (MME) per day, and the prescriber should “carefully justify” any increases to ¬> 90 MME/day. The discussion states that the 50 and 90 MME levels were chosen because of epidemiologic data showing increasing risk of overdose as the prescribed dose increases.

So, what are the implications of all of this? 

1. I’ll start with the positives:
   a. The Guideline highlights a major public health issue, namely a dramatic increase in the past 20 years in opioid prescribing and a corresponding increase in opioid overdoses and deaths, especially in the past 10 years.
   b. About half of all opioid prescriptions are written by nonspecialists, many of whom have asked for a guideline for treating chronic pain with opioids; this Guideline responds to that need.
   c. Prescribing practices for potentially high-risk medications are reinforced. One hopes that more thoughtful prescribing will reduce the habitual writing of 30-day prescriptions when 7 or 15 days is more appropriate (this assumes a 1 or 2-week, not one-month, follow-up)
   d. Chronic pain is often a complex treatment dilemma—prescribers are reminded that multimodality intervention is the preferred treatment

2. The Guideline does nothing to address (and may make worse) insufficient capacity in our healthcare infrastructure for
   a. Nonpharmacologic treatments such as physical and occupational therapy
   b. Care by pain management specialists, some of whom limit the number of patients they see for medication management
   c. Treatment for substance use disorder including methadone and buprenorphine programs

3. Capacity aside, some insurance will pay for pills but not for physical therapy

4. Many insurance plans will not cover so-called alternative interventions such as therapeutic massage. [I acknowledge a major burden on insurance plans to start covering everything in the “alternative” realm. How could they possibly evaluate them all? Perhaps plans could consider an ‘allowance’ for alternative interventions: massage, acupuncture, yoga, tai chi, etc. The PCP and patient could choose which approach seems most appropriate to the individual situation].

5. Not only is it quick and easy to write a prescription (with some serious attendant risks), but analgesics generally work much faster than other interventions. Sometimes analgesics make it possible for patients to participate in other interventions, such as physical therapy. I fear that some clinicians will interpret the Guideline as requiring physical therapy prior to using “strong analgesics” such as opioids.

6. Alternative analgesics may not be as effective and may has their own serious side effects and contraindications. NSAIDs are an obvious example of those with serious side effects, especially in elders. Acetaminophen has recently been shown to be no more effective than placebo for osteoarthritis patients in a clinical trial.

7. Because of DEA practices it is already difficult for pharmacies to maintain sufficient stock of opioids, so patients commonly must do monthly “pharmacy shopping” to fill their prescriptions. Do prescribers “get” this when the PDMP shows their patient getting their meds at a different pharmacy 4 months in a row?

8. It is easy to conjecture that insurance companies will use the Guideline to reinforce pill count limits

9. Some prescribers, already nervous about the DEA and medical and pharmacy boards looking over their shoulders, may stop prescribing opioids or limit them to no more than 50 MME/day (Morphine Milligram Equivalent)

10. The Guideline stresses screening and follow-up practices that are very time consuming. Many medical systems (and insurance companies) will not be supportive

11. The Guideline has the potential to reinforce prejudice against opioids and opioid-users that is already extensive in medicine, nursing, and pharmacy.

12. Despite language that encourages individualizing treatment plans, the barriers to complex plans are not addressed. Nor is individual patient response. “Start low, go slow” is almost always appropriate, but therapeutic limits to dosing based on epidemiologic data is not entirely rational. The patient in front of me is always an anecdote. But every anecdote falls someplace on a normal curve. We don’t know, especially when initiating treatment, where the patient will ultimately fall on the curve.

13. The Guideline discussion acknowledges that data on the effectiveness of opioids for long-term use is sparse, but lends a lot of weight to research that could be interpreted to suggest that opioids “don’t work” for chronic pain. But the research base is very, very thin.

14. There are many research questions to be addressed, some of which we really haven’t figured out how to ask, much less design an adequate study around. And who will pay for and who will do long-term studies?
   a. What are the biological differences between those who become “addicted” vs those who don’t? Is there a continuum? If so, might an individual move in both directions on the continuum?
   b. What is the impact of rate of metabolism for certain opioids on safety and effectiveness of pharmacologic treatments? What is the prevalence of the so-called ultrarapid metabolizers vs poor metabolizers?
   c. What does “opioids for chronic pain don’t work” really mean? [This clause does not come from the Guideline but is similar to statements made by groups who advocated for the Guideline as a way to reduce opioid prescribing].
   d. There seems to be a subset of people who are very functional on long-term opioids—what differentiates them from the “opioids don’t work” population?
   e. There has been some interesting work showing persistent changes in the brain after opioids have been discontinued. What is the extent of these changes over large populations? Are there predictors for which changes and what their behavioral effects are?
   f. So, really, what is the risk of becoming “addicted?” The varying finding of 0 to 50% just isn’t helpful, and neither the upper nor lower percent seem very credible. How is a clinician to determine, and explain to a patient, what is the risk of addiction?
   g. Can we develop better tools for stratifying risk for misuse?
   h. Does “high risk” have to translate to “don’t treat?” We need evidence-based models for treating chronic pain in those with a history of and those with current substance use disorder.
   i. How effective is urine toxicology monitoring in managing patients? [Will insurance companies cover this cost?]. If the Guideline writers really think urine testing has significant value, the Guideline is weak—“at least annually.”

15. What happens with all the patients who are currently on opioids for chronic pain when their prescriber (or insurance or health system or risk management department) decides that they need to reduce doses based on this Guideline? (This was happening already, even before the CDC Guideline came out)

16. The Guideline specifically does not include care of patients undergoing active cancer treatment and for those in palliative care settings. It remains to be seen what unintended impact the Guideline will have when pain may be part of a serious advanced illness, or may be part of one of several comorbidities.

17. Will professional organizations review their own guidelines, in response to the CDC Guideline? (the American Pain Society and the American Geriatrics Society both published revised guidelines in 2009)

18. Will professional organizations increase pain and chronic pain-related offerings at their annual meetings?

19. Will medical, nursing, dental and pharmacy schools start teaching more about “pain management” rather than just pharmacology and pathophysiology?

20. A major question has to be: can the efficacy and effectiveness of this Guideline be determined on a scale and in a time frame that benefits the most patients and society at large sooner rather than later? Does the government have a commitment beyond issuing a Guideline? Perhaps the CDC and collaborating NIH institutes can work with a couple of major health systems and major insurance companies to implement the Guideline in a study of a comprehensive approach to chronic pain management. The study would have to last a minimum of 2 years. It may make the most sense to start with new patients, not try to cram existing patients into the Guideline (that would be a separate study).

This Guideline puts the prestige of the CDC and US Government behind an approach to prescribing opioids that is intended to help derail the epidemic of opioid-related deaths. CDC-monitored overdose deaths from all classes of drugs (in aggregate and by class) looked like they were leveling off in 2012 and 2013, but spiked again in 2014 (the most recent national data available). The Guideline is an appropriate step, but certainly inadequate to address the enormity, much less the complexity of the issue. In addition, the inadequacies of practice and the knowledge base for treatment of chronic pain remain unaddressed.

Thomas E Quinn, APRN-CNS, AOCN is an oncology and palliative care advanced practice nurse. He has recently accepted a clinical position at Jewish Social Services Hospice in Montgomery County, MD, which will really cut into his pickleball playing at the senior center.

Photo Credit: "lego_head-pain" by Flickr user Mr. Pony via CC 
Photo Credit: "Pain!" by Flickr user Harald via CC 
Photo Credit: "pain" by Flickr user wallsdontlie via CC 

Wednesday, March 30, 2016 by Pallimed Editor ·

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