Thursday, July 30, 2015

All The Lonely People

Tommy Steel's statue of Eleanor Rigby, Liverpool
 by Kristina Newport

As hospice and palliative medicine practitioners, we have the opportunity to witness the lives and deaths of people from all walks of life. Many people we care for die surrounded by loved ones who are full of memories, pain and grief. Others, however, die alone, or with relationships too strained to bring value. When we care for these people, we learn who they are and become their witnesses. We hear their stories and secrets, as Lizzy Miles MSW discussed in a recent Pallimed post. We witness their end. And we remember.

Uberto Pasolini’s 2015 movie, Still Life, illustrates the life of one person who was serious about remembering. The main character, John May, is a government worker whose job it is to find family members of people who died alone. He works meticulously, exhausting all paths to find someone who cares. If he fails at this task, he shows his own respect by planning and attending funeral services no one else attends. He keeps his own photo album and remembers people he never knew in life.

"Sad Lady" ~Stella Newport, 4 years
I’ve often thought that I should keep a similar record of the patients I’ve met who have died. When I started fellowship, I kept a notebook of names. It started collecting dust by month 2. In practice, I’ve jotted down notes without regularity. Over the years, unique cases stand out, but specific names and stories fade.

The risk of increased numbers of people dying alone has the potential to increase as more people reach their elder years alone. Maria Carney, MD completed a literature review revealing increasing numbers of elderly US citizens without children, nicknamed “elder orphans”. A similar phenomenon is documented in the UK, with estimates that by 2030, two million pensioners in Britain will have no adult children. Both articles discuss the rising need for personal and medical care but they also raise the question: who will remember them?

This is hardly a new concept. We even have a soundtrack, nicely provided by the Beatles in their 1966 song Eleanor Rigby. Although the idea is old, it feels like a valuable and timely concept to consider. What does it mean for us, as providers and as people, to carry these people with us, or not? Particularly when we hold stories no when else knows, with no one to pass them onto? I wonder, what do other providers do to remember? To acknowledge? Is it our job to do the remembering, like John May did? Does that benefit anyone other than the remember-er? In a recent conversation with a hospice social worker, she pointed out the value in getting to know her patients, if for no other reason but that the patient will feel they will be remembered.

 

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

Photo Credit: Tommy Steel's Staue of Elanor Rigby via Wikimedia
Illustration Credit: Sad People by Stella Newport, all rights reserved

Thursday, July 30, 2015 by Kristina Newport ·

Sunday, July 26, 2015

The Art of Dying Well (Ars Moriendi)

by Amy Clarkson

In the success driven society that we live in, I’m surprised there is so little out there about a successful dying experience. There are hundreds of books about how to be a successful parent, a successful spouse, a successful employee or employer. There are success how to’s for education, healthcare, businesses, nonprofits and churches.

Likely, this absence of material about successful dying comes from the link of success to achievement. No one feels confident linking death with achievement. However, what about the idea of dying well? Is this something individually or culturally we should strive for?

Dying well sits more comfortably with us, as we can generalize a bit more about what dying well means. Usually it’s when there is an absence of suffering, when the timing coincides with loved ones presence, when symptoms are controlled and the environment is peaceful; things that at first glance seem out of the control of the person who is dying.

While we may hesitate to discuss what dying well means, historically this was not so. In the 1400’s at the behest of the Roman Catholic Church a booklet was published called “Ars Moriendi” (The Art of Dying) and was the quintessential book on preparing to die, and dying well. It was widely circulated, with over 100 editions and translations into most European languages.

The book spiritualized dying, describing five temptations people dying face. Those temptations were lack of faith, despair, impatience, vanity and greed. The way to die well, then, was to fight these temptations with their opposites. Dying well meant having faith, hope, patience, humility and generosity.

In the 1400’s the availability of medications for symptom management was non-existent. This booklet served to place reason for many of the experiences people witnessed in the death of a loved one. Without an understanding of terminal delirium and restlessness, it was easier to claim impatience as the cause and pray for patience.

In our modern day, medications and scientific understanding help us recognize and treat the physical aspects to aid in dying well. There is more, however, that may be in our control than we’d like to think.

Suffering, despite what we may believe, is not an easily medicated symptom. Since suffering originates from the mind, from experiences, and specifically beliefs and thoughts about those experiences, the control rests solely on the individual. To die well, without suffering, may incorporate some of the very things this 600-year-old book spoke of.

I have seen despair resolve when the focus of regrets moves towards the hope of resolution. I have seen vanity melt away with the courage to humbly ask for forgiveness. I have seen the suffering that stems from the greed and self- focus of ‘why me?’ disappear with a shift to gratitude for the life one has lived.

What does it mean to you to die well? It’s probably too uncomfortable to equate dying well with successful dying, but let’s at least be aware that some of the suffering we all want to avoid at the end can be dealt with while we are living.

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

Sunday, July 26, 2015 by Amy Clarkson ·

Friday, July 24, 2015

Institute of Medicine (IOM) Health Literacy and Palliative Care Workshop: A Review

by Toni L. Glover

July 9 was a good day. You know that feeling you have when you attend conference and you come back to work charged up and ready to change the world? That’s the feeling I had after listening to a live webcast of the Institute of Medicine’s Health Literacy and Palliative Care Workshop. The sessions and discussions were inspiring and conveyed the pressing need to revolutionize patient care.

I tuned in during Diane Meier’s Overview talk. Dr. Meier is one of the rock stars of palliative care and, full disclosure, I am a groupie. She asked the audience to consider where the health literacy problem lies. Is it with patients and caregivers forced to navigate an increasingly complex healthcare system or is it with healthcare professionals that offer treatments that do not add quality or longevity? More medical care is not always better care. Fee-for-service reimbursement models drive the chaos, resulting in less time spent with patients and no time for them to assimilate the information and ask questions that would allow them to make decisions consistent with their values and wishes. Too often, we offer treatments but neglect discussing the impact on quality of life.

Next I listened to Beverly Alves heartbreaking story of the difficulties of finding compassionate and coordinated care when her husband was diagnosed with cancer. It’s a strange paradox that we have made such scientific and technological advances but seem to have regressed in actually caring for patients and families. Beverly’s remarkably moving story provides a directive for what needs to be fixed in healthcare; now, not in our lifetime, but now.

Later Bob Arnold spoke about communication training for physicians. He suggested that physician-patient communication is a procedure, just like starting an intravenous catheter or putting in a chest tube. These procedures require training and practice. After all, new physicians don’t perform complicated medical procedures alone, but they are sent to talk to patients and families about prognosis, treatment options, and end-of-life care without sufficient training. Is it any wonder that physicians vastly overestimate prognosis and patients and families overwhelmingly believe that surgery (or chemotherapy) will cure stage IV cancer?

The next speaker, Elaine Wittenberg talked about communication training for nurses. The core of nursing principles aligns with palliative care. Nurses tend to assume that good nursing care is synonymous with palliative care. But it’s not. Dr. Wittenberg pointed out that nursing programs need to include more instruction in palliative care principles. In the discussion, one participant noted there was a lot of content about palliative care training for those already in the workforce but we need to more thoughtfully include palliative care content in nursing education. This struck home for me as I endeavor to infuse more palliative care content across all levels of nursing education.

We were taken to church by Reverend Richard Freeman who reminded us of the value of humanistic care. He emphasized what really matters to patients at end of life is being surrounded by loved ones. Carol Levine, and several other speakers, spoke about the forgotten caregivers. The population is aging and older caregivers are overwhelmed by navigating the healthcare maze, providing care, working, and running the household. Dr. Meier pointed out the United States spends less on social support compared to other countries. In other words, it’s easier to get chemotherapy or surgery than it is to get Meals on Wheels. An audience member shared an innovative idea: we need to train caregivers how to communicate about palliative care with the rest of the family. This ensures that everyone is on board with the patient’s wishes.

Palliative care proponents believe we need to draw a clear line between palliative care and hospice care. Palliative care is different from hospice care in that it can be offered in tandem with curative treatment while hospice care is for patients foregoing additional treatments with a prognosis of 6 months or less. Yet, I noted that the personal and patient stories shared were about patients facing end-of-life decisions. Moreover, the majority of palliative care consults at our academic health center relate to end-of-life care. I suspect this is true for most palliative care programs. I’m reminded of Dr. Meier’s saying that all hospice care is palliative care but not all palliative care is hospice care. Perhaps the differentiation between palliative and hospice care is more important to healthcare professionals than it is to the general public. What we need to convey to patients and families is that palliative care is simply patient-centered care.

I could go on about all the wonderful speakers and content, but instead encourage everyone to view thewebcast (embedded below). The webcast and the presenters’ slides will be available to replay and download. Every speaker had an important message to share. Ginger Marshall spoke about the personal notes and cards she has received from patients and families. When she has a bad day, reading these treasured notes remind her of the value and importance of the work. This webcast is a virtual card that you can open anytime you need some inspiration.


When I think about the big picture, I believe we are within the wave of a culture shift regarding healthcare. The opposing forces of old ways and new ways tend to create a tumultuous environment in our daily work lives. Heralding this shift, last week the Centers for Medicare and Medicaid Services proposed payment codes for the 2016 Medicare Physician Fee Schedule for advance care planning. If approved, these codes will allow providers to engage in meaningful and patient-centered advance care planning conversations upstream in clinics, avoiding the more difficult discussion at the bedside in the Intensive Care Unit. A recent ad drives home the point: it’s much easier to talk about your wishes when the decisions seem far away and are much harder to have while intubated with a breathing tube.

Thirty to forty years ago, the baby boomers brought about a return to natural childbirth and breastfeeding. With 10,000 baby boomers turning 65 every day, it’s time to bring about a revolution in patient-centered care and compassionate, humanistic end-of-life care. This webcast simultaneously gives hope for the progress made and provides a roadmap for the important work that remains.

Dr. Toni L. Glover PhD, GNP-BC, ACHPN is an Assistant Professor at the University of Florida, College of Nursing. The views expressed are her own and do not represent the views of College of Nursing or the University of Florida. Her research focuses on pain in older adults, pain, palliative care, and health disparities. As a Gerontological Nurse Practitioner and Advanced Certified Hospice and Palliative Care Nurse (ACHPN) she is committed to improving the care of older adults at end of life. You can find her on Twitter - @tgloverGNP

Illustration credit: Christian Sinclair for @Pallimed, available via Creative Commons

Friday, July 24, 2015 by Pallimed Editor ·

Tuesday, July 21, 2015

Film Review: Thank You for Playing

by Betsy Trapasso

“I am scared that I will forget Joel. I don’t want to forget him.” These words spoken by Ryan Green about Joel, his terminally ill five-year-old son, resonated strongly with me, while watching the documentary Thank You For Playing. How many times have we heard words similar to these from family members of hospice and palliative care patients? How many times have we held their hands and looked into their eyes and assured them that loved ones can never be forgotten?

In Thank You For Playing, co-directors Malika Zouhali-Worrall and David Osit bring us into the world of the Green family who live in Loveland, Colorado. Ryan, the father, is an indie video game developer. Amy, the mother, is a writer. Joel has three young brothers. Ryan and his creative team are developing a video game called “That Dragon, Cancer*” as a way to honor Joel and to document the family’s experience of “raising a child who is supposed to die.” The film begins when Joel is three-years old and it follows the every day life of the family as well as the development of the video game.

*Dr. Meredith MacMartin discussed That Dragon, Cancer for Pallimed back in 2013. -Ed.


Thank You For Playing (2015) - Official Teaser from Thank You For Playing on Vimeo.

**Warning: Spoilers ahead**

Joel was diagnosed with a rare brain cancer at age one and over four years of recurring tumors, surgeries and radiation and chemotherapy treatments he has outlived all the times the doctors thought he would die. Because of these treatments Joel can’t speak but that doesn’t keep him from being playful, loving and full of laughter. In the lighter moments of the film it is endearing to see all the brothers play together and to see how much they love and care for Joel.

In “That Dragon, Cancer,” Joel is a brave knight who fights the cancer dragon. Since babies can’t kill dragons, God fights for Joel. God can win. The Greens are Christians, and like so many of our families, their faith helps to sustain them through Joel’s illness. Players of the video game experience the life of Joel and his family at home and in the hospital. They are able to interact with Joel as he feeds a duck and they can push him on a swing. They see Joel receiving his treatments, sleeping in his hospital bed and sitting with Ryan in a hospital chair.

We see how players react to “That Dragon, Cancer” when Ryan takes an unfinished version of it to the PAX video game conference in Seattle. Players cry and are genuinely moved as they interact with Joel and progress through the game. They see that fighting cancer is a game and they experience what it is like for Joel and the family. Ryan cries as he watches the players and he realizes that there is great potential for the video game because “people get it.”

The scenes of Ryan and Joel in the hospital are heartbreaking. Ryan holds Joel and sings to comfort him. He sleeps with Joel in the hospital bed. Ryan cries and says that he feels helpless as he watches Joel receive more treatments. He wants to hold on tight to Joel and to never let him go. Ryan shares these experiences so that others can see what it is like to have a child with cancer. They are also helpful for our community to see because they show us what parents are thinking and feeling when their child comes to us for care.

When Joel’s brain tumors multiply and grow, the family travels to California so that he can take part in a clinical trial at the University of California, San Francisco. The family tries to live a normal life as we see Joel receiving his treatments. It is a bittersweet time because Amy is pregnant with a girl, whom they have named Zoe. The clinical trial doesn’t work for Joel so they return to Loveland and Joel is placed on home hospice care. Family and friends surround Joel. They hold him, sing to him and pray for him. The screen fades to black and we read that Joel died on March 13, 2014 at 1:52 am.

The film resumes three months after Joel has died. We see the brothers with their newborn sister Zoe. I can’t help but wonder what life is like for them. Ryan and Amy are trying to pick up the pieces in the aftermath of Joel’s death. They have finally decided on an ending for the video game that makes them happy and hopeful. The ending has Ryan and Amy on an island. Joel goes away from them while they stay on the island. Joel moves on and he makes it to the other side to be with God.

Ryan and Amy believe that “That Dragon, Cancer” will help people to see that there can be fulfillment, beauty and meaning in the deepest loss you can experience. Amy says that even though people will love Joel, it is love that will make the video game work. Love is what the players will experience and connect with in the game.

In the film, Ryan talks about how America is afraid of death and that we hide it behind closed doors. He wonders why we are not talking about the way things shape us because the things that make us us can be both tragic and beautiful. These two moving artistic creations, Thank You For Playing and “That Dragon, Cancer,” will help to start conversations about death, grief and loss and we all know that they are incredibly needed in our society.

*****************

I recently viewed Thank You For Playing at the ArcLight Documentary Series in Los Angeles. I spoke with the co-directors, Malika Zouhali-Worrall and David Osit, and they are excited for the Pallimed, hospice and palliative care communities to spread the word about their film.

Thank You For Playing will be screened at the Woods Hole Film Festival in Cape Cod, MA on July 29 and at the Melbourne International Film Festival in Melbourne, Australia in August 2015. It will also screen on PBS POV in the Fall of 2016.

Information and updates about Thank You For Playing, “That Dragon, Cancer” and the Green family are available on these websites. You can also subscribe to be on their email lists.

Thank You For Playing

“That Dragon, Cancer”

The Green family blog

*****************

Betsy Trapasso is a former hospice social worker who now leads Death Cafe LA and advocates for good end of life care. You can read more on her site or follow her on Twitter - @BetsyTrapasso. We are excited to have her writing here at Pallimed!

Photo Credit: Still and poster from the movie "Thank You for Playing"

Tuesday, July 21, 2015 by Pallimed Editor ·

Monday, July 13, 2015

The secrets of hospice patients

Can you keep a secret? Do you promise not to tell? Hospice patients and caregivers sometimes divulge information to a singular hospice staff member. We are bound by HIPAA not to talk about patients outside of what is necessary to provide care. How do you determine what is “necessary”? What about within the team though? Is everything you hear fair game for the rest of the IDG group, or are there some things you should keep to yourself? In this article, I’ll explore criteria you can use to determine the best course of action with confidential information you hear from a patient or caregiver.


The Secret I Told

As with all of the articles I write for Pallimed, this one was inspired by my experiences as a new hospice social worker. A patient was assigned to me from another social worker because of an internal restructuring. The patient had a reputation among the team as being a “challenge.” The chaplain on the team was also new to the patient. Within the first few weeks of our care, the chaplain started to frequently allude to the patient having revealed something significant, but he would not expand.

Tip #1: There is no reason to let your fellow staff members know that you’re keeping a secret if you don’t plan on sharing any part of the information. If you are going to keep a secret, then keep it.

I got to know the patient myself, and I built a trusting relationship. She revealed to me a history of multiple past traumas in great detail. I kept her stories to myself. She allowed me to take notes (mostly for my own memory). I determined initially that there was no need to share any details of her trauma. Her physical condition worsened, and it was recommended that she receive breathing treatments. Nursing staff reported that the patient “freaked out” during these treatments and became very anxious. The nursing staff was frustrated because they felt the patient would benefit from the treatment, but she did not want it. It did not take me long to recognize the connection between the patient’s fear of the breathing treatments and her trauma history.

Tip #2: If the secret is relevant to the Plan of Care, consider sharing information at a high level that will help staff to understand patient behavior.

I did not have to share the details of the patient’s trauma, but I did inform the team that the patient’s trauma history was affecting her acceptance of the breathing treatments. This information helped the staff to have empathy for the patient and her fear of the breathing treatments.


Other Patient Secrets

Hospice patient and caregiver secrets that I’ve heard fall into three categories: past acts, personal feelings, and current behaviors.

Past acts: Thankfully, I’ve yet to have anyone confess to a crime, so I cannot speak to what to do in that type of situation. If someone is experiencing extreme guilt for something they have done in the past, or how they have treated someone, I will coordinate with the chaplain to be sure that we are providing support as the patient or caregiver works through an issue. Oftentimes, there is a faith-based component to these worries. The details of these stories are not relevant to the Plan of Care, and therefore, not necessary to share in any form.

Tip #3: If patient feels guilty about something they have done in the past, but they have not yet revealed details, I might share with the team that the patient is working through an unkown issue. This allows for all team members to be ready to provide emotional support should the patient divulge information while they are providing care.

Sometimes it is the hospice aide or volunteer who hears the patient’s secrets. I do encourage these team members to share with the social worker or chaplain what is happening. The aide or volunteer may not be comfortable with the burden of the information that they have received, and so it is good for the social worker or chaplain to provide support to the staff that is providing support to the patient. Despite our best efforts, there are some patients who may not ever reveal to the social worker what they have told others. This is okay, as long as the social worker is apprised of the situation and adjusts the Plan of Care accordingly, if necessary.

Personal feelings: It is not uncommon for hospice patients or caregivers to have “negative emotions” such as anger, guilt, resentment, apathy, fear and/or shame towards others or themselves. Patients and caregivers can feel badly about the emotions they are experiencing. A big part of the social worker’s job is normalize feelings. Patients and caregivers will not expressly tell you not to reshare these feelings, but it is not uncommon for staff to be “caught in the middle” when the feelings are directed towards their own family members. It is not our place to get involved and share these thoughts with the other family members.

Tip #4: If appropriate, encourage patient/caregiver to speak about their feelings with the person directly.

Tip #5: Consider how the expressed feelings may affect the best care possible for the patient and family. For example, expressions of resentment can be an indicator that a caregiver might be a candidate for a respite break.

Remember, share only what is necessary.

Tip #6: Do not gossip with team about patient conflicts. Every provider that is in the position to hear secrets should have an outlet for their own self care. Social workers should seek supervision, chaplains have supportive networks, both could use journaling.

Current behaviors: Some patients or caregivers will reveal something to the hospice staff about behaviors. Hospice patients and caregivers sometimes will not tell their providers of alcohol, tobacco and/or current/past drug abuse. There is a common fear of judgement, or scolding. They don’t know that as hospice providers, we’ve seen it all. That’s not to say we should always look the other way. A patient’s present alcohol use or past drug use could interact with their medications. Even unreported over the counter medicines can affect prescribed medicines. It is in the patient’s best interest that the case manager knows about these things.

Tip #7: Keep the case manager informed on health behaviors that could affect the efficacy of medications and Plan of Care interventions.

Unfortunately, not every family member is a willing participant in a patient’s care. Sometimes patients can be in home situations that are less than ideal. Hospice staff members have to address signs of abuse or neglect. Hospice staff can be in the middle of family situations in which there is the threat of physical violence. There are also home situations in which there is suspected drug diversion; caregivers, as well, can be known to be using or abusing alcohol and drugs. We need to assess how this impacts their ability to provide care for the patient. In any of these types of situations, the hospice staff member needs to coordinate with the clinical manager and the team regarding what we know.

Tip #8: Keep the team informed of any behaviors that could impact the safety of the patient or hospice staff.

Ultimately, the simple barometer for whether to reshare can be measured by answering these questions:
  • What is the purpose of my sharing this information?
  • How does this impact the Plan of Care?
Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio at Greystone Hospice. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW

Photo credit: The Book of Secrets available to buy from GILDbookbinders on Etsy

Monday, July 13, 2015 by Lizzy Miles ·

Wednesday, July 8, 2015

Advocacy works! Medicare proposes payments for advance care planning!

by Phil Rodgers

One of the most valuable things I’ve learned over my 15+ years as a palliative care physician is the importance of gratitude. I’ve learned this from my mentors, my interdisciplinary colleagues, my students, and—most importantly—my patients and their families. Each day that I remember how grateful I am for the privilege of doing what I do, is a better day both for me and for those I work with.

Today I am especially grateful, but for a different reason. Late this afternoon, CMS announced that it will begin reimbursing physicians and qualified practitioners for providing advance care planning (ACP) services to Medicare beneficiaries, starting January 2016. In the proposed Medicare Physician Fee Schedule (MPFS) for 2016, two new CPT codes (99497 and 99498) can be used to bill for more complex advance care planning conversations, whether or not any other services are also provided during the same encounter (detail on pages 246-7). These codes will also allow CMS to track delivery of ACP services, and their impact on care for Medicare beneficiaries.

Many Pallimed readers will be familiar with the growing body of published evidence that ACP leads to care more consistent with individual preferences, higher patient and family satisfaction, fewer unwanted hospitalizations, and lower rates of caregiver distress, depression and lost productivity. But most of you probably didn’t need to read those studies, because you see these deeply valuable, patient- and family-centered outcomes every day in your practices. You already know that capable advance care planning is essential to delivering the best care possible.

So I am grateful that CMS has now recognized this value. And they are in good company: the IOM’s report Dying In America: Improving Quality and Honoring Individual Preferences Near the End of Life cites payment for ACP services among its key recommendations; numerous private insurers and some state Medicaid programs already reimburse practitioners for delivering ACP services; and a broad coalition of ACP supporters—including specialty societies representing the vast majority of US physicians, the AARP, the American Cancer Society LiveSTRONG, the Alzheimer’s Association, the National Council on Aging, and many others—has publicly urged CMS to begin paying CPT codes for ACP services.

I am also grateful to the many HPM professionals and friends who submitted comments to CMS late last year in support of ACP services. Some of you may even have submitted in response to synchronized posts on Pallimed, GeriPal and AAHPM last December—and my gratitude extends to all three host sites for their generosity. Those comments really do matter, and CMS received overwhelmingly positive support for the ACP codes.

There is work yet to be done, as the MPFS proposed rule will not be finalized until late fall, and we’ll need to understand together how and when to use the new codes, so stay tuned in coming weeks and months.

But for today, there is much gratitude. I hope you feel at least some of it with me.

For more info, see the post on GeriPal by Paul Tatum on this same subject, with a different focus.

Phil Rodgers, MD, FAAHPM is co-chair of the American Academy of Hospice and Palliative Medicine Public Policy committee.

Wednesday, July 8, 2015 by Pallimed Editor ·

Monday, July 6, 2015

Inspiration and Innovation: Technology Can Help Us Build a Compassionate Future

by Michael Fratkin

People, Homo sapiens, in their current anatomic form, have wandered this planet for around 150,000 years. 93 Billion of us have been born, lived a while, and died. The era of “Modern Medicine” represents about 0.05% of human history and represents the context within which most people currently complete their lives. During this era we have extended our life spans through the application of beneficial medical technologies and improved the quality of living for many of us.

But have we improved the quality of our dying? Has the “medicalization” of aging and death relieved suffering or has it actually made it worse? Some would argue that in all of human history, people have never suffered as much as they do now as they complete their lives. In the past, people lived their lives exposed to the realities of birth, illness, and death. When they faced their own, they were cared for by family, community, and with healers that brought whatever tools they had to soothe, heal, and honor them in their passing.

We continue in the tradition of healers, functioning in a modern context using the tools at our disposal to soothe, heal, and honor. The modern tools and technology are as dazzling and imperfect to us as their tools were to our predecessors. In palliative medicine and hospice care we tend to use simple technologies to advance exactly the same goals while trusting the impact of personal engagement in the same way our forbearers did.

Topic 1: How has the “medicalization” of care for the very ill worsened/improved the quality of dying for human beings?

The economic and regulatory models, as well as the resulting documentation requirements have an enormous impact on the experience of people with illness and their families, not to mention the experience of those of us working in the field. Changes are underway that will radically alter the incentive structures that currently reward doing more TO people rather than FOR them. Value based payment models will align the payers and providers to share risk and savings to deliver on person-centered goals.

Topic 2: How can emerging payment models and future medical records serve to advance/obstruct the well being of people approaching death?

At ResolutionCare, we have taken off-the-shelf videoconferencing technology and applied it to the challenges of providing community based specialty palliative care and improving primary palliative care in rural Northern California. Our current solutions revealed themselves only when we got clear about our view of the soul of caring, then scanned our current environment for tools that would help us restore what had been lost.

Topic 3: What characterizes the soul of caring for you and your teams? What’s in the way?

The infrastructure of society is being transformed at dizzying velocity with information and communication technology. Global Community is no longer an abstraction; it’s a reality. Vast stores of information and artificial intelligence may free the human mind to from obsession with knowledge to its artful use.

Topic 4: If we don’t have to “know everything”, what does it mean to provide care and facilitate healing for people completing their lives?

Michael D. Fratkin is a father, husband, brother, son, and physician. He is the founder and director of Resolution Care, which brings Palliative Medicine to the community using the reach of technology coupled with a spirit of compassion.

What: #hpm chat on Twitter
When: Wed July 8, 2015 - 9p ET/ 6p PT
Host: Dr. Michael Fratkin (@ResolutionCare)

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Monday, July 6, 2015 by Pallimed Editor ·

Friday, July 3, 2015

Cases: When being “down in the dumps” isn’t depression

by Shannon Haliko

Case:
Mr. K is a 58-year-old male with diabetes and ischemic cardiomyopathy which contributed to end-stage heart failure necessitating circulatory support with a left ventricular assist device (LVAD) implanted one year ago. His post-operative course has been complicated with multiple admissions for infection resulting in several operative revisions and kidney injury. He was admitted with a similar presentation prompting a moment of reflection by his primary team.

Over the last year, Mr. K had declining involvement in his own care, which included poor attention to his medications and wound dressings. It was clear that Mr. K’s lack of involvement was contributing to his frequent admissions, but the root of Mr. K’s suspected apathy was unclear. The Palliative Care team was consulted to assess the patient’s goals of care.

Interviewing Mr. K was challenging. Though he was pleasant and cooperative, he was distractible. Attempts to elicit his values would take the listener on a long, circumferential and circumstantial path without a clear ending. Despite his confusing stories, he clearly explained a hope to regain his ability to perform tasks on his farm. He also succinctly described the importance of sharing his life with family, including several new grandchildren. While this information helped clarify his values and healthcare goals, the team questioned his cognitive ability. Because we were unable to distinguish between depression, apathy, and cognitive impairment, we asked for a formal psychiatry consult.

Mr. K described his mood as “down in the dumps” for the last two years; he felt his heart failure symptoms prevented him from performing even simple activities on his farm. Unfortunately, he had not noticed any improvement in his energy with LVAD implantation one year ago, but did reflect that he sustained damage to his liver and kidney. Despite prominent feelings related to his illnesses and poor functional status, he remained hopeful that he would recover. Though he provided an accurate general picture of his health state, he gave inconsistent or superficial answers to detailed inquiry about recent complications. He denied feelings of anxiety, hopelessness, guilt or suicidal thoughts and had not noticed any changes in appetite or sleep, or hallucinations. He still found interest in television shows and NASCAR racing.

On exam, he was disheveled and often violated social norms of the interview (interrupting his own storytelling to make an unrelated phone call, commenting on the TV programs currently showing). He had no abnormalities in muscle bulk, tone or movement. There was no dysmetria, tremor or gait disturbance but his Luria test (for executive motor control) was abnormal. His speech was broken into single sentence or phrase fragments with a rare moment of word searching with use of circumlocutions.

His affect was reactive, full and incongruent with his stated mood of depression. His thought content, while future oriented, was indeed impaired as noted by the Palliative Care team, with a particular focus on concrete thought processes. Memory of his own medical history was inconsistent, and his delayed recall of three objects was impaired. His inconsistencies also manifested when discussing insight for his own illness, with a tendency to over-simplify his condition or health consequences.


Discussion:
Mr. K’s exam is consistent with a mild neurocognitive disorder (NCD) with mixed features (concentration, executive function, and mild memory and language impairments). NCD is a new diagnosis found in the update of the DSM-V. This update of psychiatric diagnosis guidelines re-organizes the previous diagnoses of mild cognitive impairment (MCI) and dementia to a neurocognitive disorder (NCD) of either mild or major impairments. NCD is defined as “a change from previous level of function with noted impairment in one of the following domains: complex attention; learning or memory; language; perceptual-motor; social cognition and executive function”1. The distinction between mild or major impairment is determined by the ability to live independently. Subtypes of NCD can be described by the dementia’s presumed etiology, for example Alzheimer’s type. The definition of NCD yields high inter-rater reliability among clinicians, but the diagnosis is too new to be sure of its prevalence. MCI, the closest approximation of mild NCD, has a prevalence of between 3-42% reported across studies of at-risk inpatients and outpatients.2 The prognosis related to NCD is uncertain. Some patients with mild NCD progress to major NCD, but with others the disease is stable or may revert to normal cognition.

There are many hypotheses for the pathophysiology behind neuro-degeneration seen in NCD, including vascular deficits and inflammatory pathways, but no unifying theory has been confirmed. Effective pharmacologic treatment of NCD is currently lacking. Anticholinesterase inhibitors should be utilized only in mild to moderate Alzheimer’s dementia3, but recent guidelines to support this practice are either weak4 or discouraging5. Promising agents currently include noradrenergic and polyphenolic compounds (ginkgo biloba, wine and some vegetables). Non-pharmacologic therapies (exercise, diet, cognitive stimulation) show variable effects, have poor generalizability, or impermanent results. Other non-pharmacological treatments (cognitive behavioral therapy) have focused on neuropsychiatric symptoms (mood disturbance, apathy, agitation and psychosis) and show improvement in symptoms but not underlying cognitive impairments.6 Pharmacologic treatment of the same symptoms has not been found beneficial and may be associated with a more rapid decline7.
Mr. K has several risk factors for NCD (heart failure with its metabolic and perfusion derangements, atherosclerosis, bypass surgery and the LVAD itself)8. Up to 60% of patients demonstrate some level of cognitive deficit both before and after implantation.9 Additionally, depression is present in 20-30% of LVAD patients10,11, and is often missed, misdiagnosed12 or even confused with cognitive impairment.

Given that depression and NCD often co-occur, it is important to routinely screen patients for both. The PHQ-2, a rapid two question screen for depression that has a sensitively of 97% and specificity of 96%.13 An optimal screening test for NCD remains to be determined, but the mini-Kingston standardized cognitive assessment-revised (mini-KSCAr) yields the highest sensitivity and specificity studied to date. (Detection of mild NCD: sensitivity 81% and specificity 85%; Detection of major NCD: sensitivity 100% specificity 91%. Comparators include Mini-Mental State Examination (MMSE)*, the clock drawing test (CDT), and Montreal Cognitive Assessment (MoCA))14. Identification of complex or concurrent disorders would likely benefit from referral to a specialist for standardized neurocognitive testing and treatment.

*MMSE is copyrighted - see GeriPal for more - Ed.

Case Resolution:
At examination, Mr. K agreed to pursue rehabilitation on discharge in a care facility rather than his home. He clearly described the risk, benefits and alternatives to the choice supporting our assessment of capacity for this decision. However, we expect Mr. K’s capacity will be limited for more complex decisions, and the primary team was alerted that appropriate evaluation of his capacity should be undertaken for each future healthcare decision.

References:
1. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5).; 2013. doi:10.1176/appi.books.9780890425596.744053.

2. Panza F, D’Introno A, Colacicco AM, et al. Current epidemiology of mild cognitive impairment and other predementia syndromes. Am J Geriatr Psychiatry. 2005;13(8):633-644. doi:10.1176/appi.ajgp.13.8.633.

3. Dementia | 1-recommendations | Guidance and guidelines | NICE. http://www.nice.org.uk/guidance/cg42/chapter/1-recommendations#interventions-for-cognitive-symptoms-and-maintenance-of-function-for-people-with-dementia. Accessed June 3, 2015.

4. Doody RS, Stevens JC, Beck C, et al. Practice parameter: Management of dementia (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2001;56(9):1154-1166. doi:10.1212/WNL.56.9.1154.

5. Daviglus ML, Bell CC, Berrettini W, et al. NIH state-of-the-science conference statement: Preventing Alzheimer’s disease and cognitive decline. NIH Consens State Sci Statements. 2010;27(4):1-30. Accessed June 1, 2015.

6. Sachs-Ericsson N, Blazer DG. The new DSM-5 diagnosis of mild neurocognitive disorder and its relation to research in mild cognitive impairment. Aging Ment Health. 2015;19(1):2-12. doi:10.1080/13607863.2014.920303.

7. Rosenberg PB, Mielke MM, Han D, et al. The association of psychotropic medication use with the cognitive, functional, and neuropsychiatric trajectory of Alzheimer’s disease. Int J Geriatr Psychiatry. 2012;27(12):1248-1257. doi:10.1002/gps.3769.

8. Cannon JA, McMurray JJ, Quinn TJ. “Hearts and minds”: association, causation and implication of cognitive impairment in heart failure. Alzheimers Res Ther. 2015;7(1):22. doi:10.1186/s13195-015-0106-5.

9. Petrucci RJ, Truesdell KC, Carter A, et al. Cognitive dysfunction in advanced heart failure and prospective cardiac assist device patients. Ann Thorac Surg. 2006;81(5):1738-1744. doi:10.1016/j.athoracsur.2005.12.010.

10. Baba A, Hirata G, Yokoyama F, et al. Psychiatric problems of heart transplant candidates with left ventricular assist devices. J Artif Organs. 2006;9(4):203-208. doi:10.1007/s10047-006-0353-0.

11. Rutledge T, Reis VA, Linke SE, Greenberg BH, Mills PJ. Depression in heart failure a meta-analytic review of prevalence, intervention effects, and associations with clinical outcomes. J Am Coll Cardiol. 2006;48(8):1527-1537. doi:10.1016/j.jacc.2006.06.055.

12. Boland RJ, Diaz S, Lamdan RM, Ramchandani D, McCartney JR. Overdiagnosis of depression in the general hospital. Gen Hosp Psychiatry. 1996;18(1):28-35. doi:10.1016/0163-8343(95)00089-5.

13. Maurer DM. Screening for depression. Am Fam Physician. 2012;85(2):139-144. http://www.ncbi.nlm.nih.gov/pubmed/22335214. Accessed April 22, 2015.

14. Liew TM, Feng L, Gao Q, Ng TP, Yap P. Diagnostic utility of Montreal Cognitive Assessment in the Fifth Edition of Diagnostic and Statistical Manual of Mental Disorders: major and mild neurocognitive disorders. J Am Med Dir Assoc. 2015;16(2):144-148. doi:10.1016/j.jamda.2014.07.021.

Original Case by Shannon Haliko, MD
Case Conferences Editor - Christian Sinclair, MD
University of Pittsburgh Medical Center

Photo Credit: Dunn Harvárr Valley by Asbooth2011 via Wikimedia Commons

Pallimed Case Conference Disclaimer: This post is not intended to substitute good individualized clinical judgement or replace a physician-patient relationship. It is published as a means to illustrate important teaching points in healthcare. Patient details may have been changed by Pallimed editors to ensnure anonymity. Links and minor edits are made for clarity and Pallimed editorial standards.

Friday, July 3, 2015 by Pallimed Editor ·

ABIM - "HPM docs don't need to maintain internal medicine certification"

by Christian Sinclair

The American Board of Internal Medicine (ABIM) announced this week that board certified hospice and palliative medicine (HPM) doctors no longer need to maintain their internal medicine board certification (through exams and MOC) to keep their HPM board certification. Internal medicine doctors make up a significant majority of HPM docs, and many of them are practicing full time HPM. When you are doing full time HPM, the need to know how to work up hepatitis, or a new heart arrhythmia is not as critical. Clearly, internal medicine is a great foundation for being a good HPM doc, but the ongoing maintenance of internal medicine board certification is most valuable for those physicians who practice internal medicine full time.

But what about HPM board certified doctors who are primary boarded in family medicine, emergency medicine or any other specialty?  Well, consider this a chance to take this letter from ABIM to your representative groups and ask them for a similar exemption.

Of course for those of you who are doing HPM part-time, you may likely choose to continue your internal medicine MOC (e.g. hospitalists, internists, or primary care doctors).

In addition, you should check with your employer and make sure the organizational policy doesn't require you to be dual board -certified. Especially for some academic institutions their may still be a high bar set.

So thanks to the many people at the American Academy of Hospice and Palliative Medicine (AAHPM) and the American Board of Internal Medicine for helping to move this forward. Knowing what AAHPM has done to make initiatives like this happen, makes me glad to be part of the organization.

Now what are all of you internal medicine based HPM docs going to do with all that free time you have just been given?


(Interestingly GeriPal's Alex Smith wrote about this very dilemma last year.)

Christian Sinclair is a palliative medicine doctor at the University of Kansas, editor of Pallimed, and co-founder of #HPM chat. And now he is an internal medicine doctor with a lot more free time.

Photo Credit: Screencap from SpongeBob SquarePants Photo Credit: Celebrate from Giphy.com (that is not the author of this article)

by Christian Sinclair ·

Wednesday, June 24, 2015

Steal This Idea: Hospice and Palliative Care App Reviews

by Christian Sinclair

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

Idea: Hospice and Palliative Care* App reviews

*This idea could really work for any specialty

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

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

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

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

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

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

Expansion ideas: None identified.

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


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

Wednesday, June 24, 2015 by Christian Sinclair ·

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