Saturday, April 1, 2017
By Vickie Leff
Stand Up! was 2017’s theme for Social Work Month. As many of us know, social workers are excellent advocates; advocacy it is a core skill that is integral to our teaching, profession, and interventions. In celebration of that theme, as March concludes, I want to challenge you to spread that enthusiasm and charter across the palliative care universe this year. After all, palliative care is a team sport, defining itself not whole until a physician, nurse and social worker (at a minimum, with ideally many more disciplines involved) are members. This is not a random collection of professionals, but a calculated necessity based on evidence of how the best care can be provided.
But the world of medicine, where most of our patients live, has many silos and doesn’t often work as an interprofessional team. The administrators we work with, who are responsible for the growth of our programs, may not be accustomed to such an interprofessional collaboration and often have to account for more factors than just best evidence based care. All the more reason for all members of the team to Stand Up! for each other. It is not enough for the physician to lobby for more physician positions without the unwavering support of their nurse and social work colleagues; or a nurse practitioner without the other professionals bringing their voice to the discussion.
This is hard work we all do in the field of palliative care; it takes its toll on us emotionally. Some days we feel we make no difference at all and other days can be full of meaning and reward. Doing the work by ourselves, however, is dangerous and although necessary to get the work done, is never palliative care at its best. We must be vigilant about reminding ourselves and colleagues about this as we struggle through the day to see 11 new consults on top of the 25 already on the list. Standing up for each other is one way to remind ourselves that we are equally important, each have something vital to bring to our patients and families.
It is exhausting work, but we mustn’t let that tire us from voicing the support we all need to be the best team possible. I will stand up for our NP’s, our physicians and social workers. Without one of them, we all fail. Our patients need all of us, not just one. This is what makes palliative care so impactful to individuals and families; we tend to the whole of patient and their family. Just as we tend to our patients, we must stand up for all of us.
Saturday, April 1, 2017 by Pallimed Editor ·
Monday, March 27, 2017
We are working to broaden opportunities to include more people in our conversations.
- Are you not on Twitter, but are interested in some resources and webinars about ways to get started? Sign up for some Twitter Basics resources here.
- Are you not sure about signing up for Twitter yet, but you are interested in the topics discussed at #hpm chat? Sign up here to receive occasional updates about the #hpm chat discussions.
As Christian said, “taking time to to reboot and refresh is always good,” so with that #hpm’ers, we invite you to mark your calendars for our 2017 #hpm chats!
- March 29th, 2017
- April 26th, 2017
- May 31st, 2017
- June 28th, 2017
- July 26th, 2017
- August 30th, 2017
- September 27th, 2017
- October 25th, 2017
- November 29th, 2017
- December 27th, 2017
Monday, March 27, 2017 by Renee Berry ·
Wednesday, March 22, 2017
By Abigail Latimer
Although I have three years of hospice clinical social work, I am only six months into my career with inpatient palliative care. I learned about SWHPN (Social Work Hospice & Palliative Care Network) and quickly applied and received the scholarship to attend the conference. It was beyond any previously held expectation and I left in awe of the work that is being done from around the country and world. As I sat next to great leaders like Dr. Grace Christ, Terri Altilio, LCSW and Shirley Otis-Green, LCSW, OSW-C (to name a few) I felt humble and as Susan Blacker, MSW, RSW and Susan Hedlund, LCSW, OSW-C described during their accidental leadership presentation, I thought to myself “oops, maybe I am not supposed to be here!”
The week was full of encouragement to pursue research and take advantage of leadership opportunities with strategies and words of advice to guide you. We heard from Andrew MacPherson who reminded us to stay calm, there are positive conversations in Washington and time is on our side regarding changes with the ACA. We were reassured the calls to legislators and other political leaders helps and to keep “demonstrating the hell out of it” to see change.
Myra Christopher and Susan Hedlund approached the all too familiar topic of PAD, reminding us to support our patients first and remember there are “good people on both sides of the debate.” Agreeing we all want to see changes in the way we provide care to those at end of life.
The Consensus Project and efforts to establish Hospice and Palliative Care credentialing are well under way and we were asked to send our job descriptions to Dr. Barbara Head. The theme “there’s not enough of us” kept resonating throughout the sessions, leaving an open invite for advancement in our field, but also the overwhelming feeling of responsibility.
Emerging leader Anne Kelemen, LICSW joined her colleagues Vickie Leff, LCSW, BCD and Terri Altilio, LCSW to end the conference reminding us our language has power. I desperately wished for my pen to magically absorb their knowledge as I frantically scribbled down their words. As social workers we are given the honor to hold our team members and other professionals accountable to recognize distortions, make the implicit explicit and remove the burden of blame from our patients and families. Also, don’t forget to look for the humor as the situations we deal with are absurdly difficult.
I, like many others, came to this conference wanting information, a new skill or technique to help my patients or ways to connect intra-professionally. However, I left- we all left- with so much more. I will move forward with the confidence to invite myself to the table to not only provide a knowledge and skill set but also to learn and respect other perspectives. Of course this is easy when I know the supportive community of SWHPN is all in.
My notes from the week reflect numerous ideas with strategies and potential supportive contacts. Generated ideas include hospital wide bereavement protocol, social work journal club, caregiver support group, methods of teaching my student and development of a social work student handbook. Ambitious? Yes. Possible? Absolutely. Not before mentioned, however, is the unquantifiable takeaways; the things you cannot quite put into words. The way I look at patients and families on day one post-conference has changed. The way I carry myself, the language I choose, the attitude and approach to each situation has evolved in such a way that my work will never be the same. I am happy about this, but mostly because the people I serve, will benefit the most.
Abigail Latimer, LCSW is a Clinical Social Worker for Palliative Care at the University of Kentucky Hospital in Lexington, KY. She is currently researching the ability of case managers in a hospital setting to identify and respond to bereavement needs in a hospital setting and seeking her doctoral degree at the University of Kentucky College of Social Work. She is an avid health and fitness enthusiast and most recently had surgery to repair her shoulder following a wrestling injury. And yes, she was the wrestler. You can contact her at firstname.lastname@example.org.
Wednesday, March 22, 2017 by Pallimed Editor ·
Monday, March 20, 2017
By Karen B. Kaplan
Reading Dr. Sacks’ farewell book with its mournful black cover was like going through a typical day on the job as a hospice chaplain. Just like my patients, this famous author, well-known for his medical narratives such as The Man Who Mistook His Wife For A Hat: And Other Clinical Tales lists his regrets, his triumphs, his hopes, and his efforts to make sense of the life that he had led. In a word, this book is about how he dealt with his approaching end. Many of us can relate to his regrets, which included wasting time, being shy, and not traveling more. He also hoped to love and work as long as possible; again, much as the average person might yearn for in this circumstance. He also mentioned his regret at not having learned a second language.
Finding out what he had to say about his own medical narrative may interest those who almost never hear about or think about what it means to review one’s life as death nears, but for me I initially found that very predictable. Nevertheless, because he expresses it so eloquently, even as a jaded clinician, I became more and more captivated by his life review. More than that, reading this little book became a ritual means for me to say goodbye to this spectacular and compassionate doctor. For example he explains, “[As I get older] I begin to feel not a shrinking but an enlargement of mental life and perspective…One has seen triumphs and tragedies, booms and busts…One is more conscience of transience, and perhaps, of beauty….One can take a long view and have a vivid, lived sense of history not possible at an earlier age.”
The book was engrossing in so many other respects as well. Like his other works, he offers a distinctive view that makes it a privilege to saunter among his words. Who else would link the number assigned to each element in the periodic table with one’s age? He opens his essay entitled “Gratitude” by saying, “Mercury is element number 80….on Tuesday I will be 80 myself.” He goes on to say that when he was eleven years old that instead of referring to his age, he explained, “I could say ‘I am sodium.’” (Sodium is the eleventh element). Such an association alone should be enough to entice the scientifically minded and the intellectually curious to get this book.
It is poignant to read that his defense mechanism for dealing with loss was to “turn to the nonhuman.” It saddened me to learn that when he was sent away to a boarding school, “numbers became my friends.”And that “the elements and the periodic table became my companions.”
The last chapter is entitled “Sabbath.” Here he mentions his Orthodox upbringing, and his growing indifference to the practice of Judaism and finally his rupture with it when his mother utterly rejected him when she found out he was gay. Much later in life, he was introduced to positive experiences of the Sabbath and found he could enjoy its peace not only on the seventh day of each week, but on the “seventh” day of his life as well.
The act itself of perusing the book is a sort of Sabbath. It causes the reader to reflect, to pause, and to savor existence. “I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.”
Karen B. Kaplan has been a board certified hospice chaplain for eight years, and is currently serving Center for Hope Hospice in Elizabeth, NJ. She herself has captured end-of-life narratives from her patients in her book, Encountering The Edge: What People Told Me Before They Died. (Pen-L Publishing, 2014). Karen finds balance in her life by reading gentle science fiction (where the robots are friendly and not a weapon in sight) and teaching English as a Second Language.
Monday, March 20, 2017 by Pallimed Editor ·
Sunday, March 19, 2017
March 19 is Certified Nurses Day, a day set aside to honor nurses who improve patient outcomes through certification in their specialty. The American Nurses Credentialing Center (ANCC) states: “A registered nurse (RN) license allows nurses to practice. Certification affirms advanced knowledge, skill, and practice to meet the challenges of modern nursing.”
As an ICU nurse, I see the challenges of modern nursing as witnessing sicker patients undergoing extreme measures; attempting to extend the length of life but not necessarily the quality of life. ICU nurses have 24/7 intimate contact with their patients. More times than not, I have a direct hand in implementing these extreme, often painful measures, leading to moral distress.
While most ICU nurses choose a Critical Care Registered Nurse certification (CCRN), I chose a certification with a primary aim to improve the quality of life for my patients and families: the Certified Hospice and Palliative Nurse (CHPN). Palliative care focuses on holistic care of patients and their families, including management of physical, psychosocial and spiritual symptoms, as well as communication about patient and family concerns and how treatment aligns with each patient's values and preferences. ICU patients have serious and life-threatening illnesses requiring advanced care. These serious illnesses and the intensive care they require can cause critically ill patients to suffer from a variety of distressing symptoms including pain, dyspnea, delirium, fatigue, and anxiety. This advanced care frequently transitions to end-of-life care. I regularly see patients transferred to my unit when other measures are exhausted, when we are the last hope against the inevitable. Witnessing these symptoms and the difficult decisions made during the transition can cause families significant distress and remorse.
I have often said that I am a Certified Hospice and Palliative ICU nurse because many times my most critical care goes to the ones who are left behind. My certification in palliative care enables me to gently guide patients and families through the illness and the transition to end-of-life care. It allows me to simultaneously provide comfort and life-saving measures: concurrent critical care and palliative care, just as it can and should be. When I feel my patients and families aren’t getting the care they deserve, my CHPN credentials give me the knowledge base, confidence, and voice I need to advocate for them.
My certification also serves as an outreach for hospice and palliative care. My name badge has a noticeable yellow card behind it that says “LORI, CHPN”. The purpose of the card is to easily identify a nurse’s first name and certification. I am often asked by my patients’ families what the “CHPN” stands for. In this death-avoidant ICU culture one might hesitate to mention the words “hospice and palliative care”. I do not. I proudly explain the meaning of my credentials and their purpose: to provide expert symptom management and to guide my patients and families through serious illness while focusing on quality of life. By the time I am asked what my certification means, they have already witnessed me working to keep their loved one alive. They have already begun to trust me and know my intentions are good. They have seen me celebrate the good news, encourage their hope, and wish for their miracle. They see me on their team, hoping for the best while preparing them for the worst. Year after year nurses are voted the most trusted profession. What better way to demonstrate the importance and the good of hospice and palliative care than to have more bedside nurses with CHPN credentials?
On this Certified Nurses Day, I encourage any nurse who cares for patients with serious illness and who would like to see more care focused on quality of life to consider certification in hospice and palliative care. I believe we can have a hand in changing the culture of healthcare. The CHPN is the preferred nursing certification of the Hospice and Palliative Nurses Association (HPNA). If you are interested in learning more about this certification and others offered, please visit the Hospice and Palliative Credentialing Center.
Lori Ruder, MSN, RN, CHPN is an ICU nurse at University Hospitals Cleveland Medical Center, where she was the first ICU RN to attain certification in Hospice and Palliative Care. This certification has improved not only her care of patients and families, but also her job satisfaction. You can find her on Twitter @LoriRuder.
Sunday, March 19, 2017 by Pallimed Editor ·
Friday, March 17, 2017
By Jennifer J. Wilhoit
We give so much of ourselves as hospice and palliative care service providers. And we grow accustomed to the moment-by-moment changes, depth of interaction, the poignant or blessed final goodbyes that characterize this work. Some of what we do feels very positive: the deep gratification of tending to the needs of people who are chronically ill or dying and to their families. But it can also be wearying for us; we do not offer our expertise in a vacuum, or as something-other-than-humans. We have personal lives, are subject to the vagaries of daily existence, embrace relationships with family and friends that need attention and care, engage chores to maintain our lives.
Where in all of that is the refreshment?
This article offers some very basic nature-based practices that we can use on a regular—if not frequent—basis with little preparation in moments in which we find ourselves: depleted, enervated, or in need of clarity. I have been a hospice volunteer for more than sixteen years, while also serving the deep needs of people in transition through my private professional practice. What I’ve learned from both of these endeavors is that showing up to “the other” in an engaged, dynamic manner is not only essential for them; I must show up to myself in such a way, too. We need to maintain a daily connection to fluidity in our lives.
All of these small, simple acts can restore us, thus allowing us to really show up to ourselves as well as to those we serve. I offer them in three categories: practices that nurture, practices that inspire, and practices that offer insight.
- Sit in a comfortable place outside.
- Breathe intentionally with nature.
- Recall a time you felt especially calm in nature.
- Take with you to patient visits: rose petals, smooth rocks, or a few shells.
- Offer an opportunity for touch or smell for those objects that are soft or fragrant.
- Consider leaving a small nature item with a patient, family member, or facility staff.
- Create something beautiful in nature, such as a circle made of stones or leaves.
- Bring nature inside your home or into your workspace.
- Photograph something inspiring in the natural world and carry it with you.
- Take some nature item representative of the season into your patient visits (i.e. colorful leaves, a bowl of snow, a vase of rainwater, spring wildflowers).
- Share a beautiful nature photograph with your patients or family members.
- Read a short stanza of nature writing or nature poetry aloud to someone (this also serves you).
- Take a work issue on a walk or hike. Even a short, speedy walk around the block can lend a new perspective.
- Focus your attention on a tree or favorite structure in/of nature as you contemplate a dilemma.
- Consider the four seasons and notice which one you are experiencing on your inner landscape today (e.g., emotionally, spiritually). Imagine that: summer = flourishing, autumn = blaze of beauty, winter = rejuvenation or preserving energy, and spring = new growth.
- Take to a patient a small object from nature that they’ve spoken about. Maybe you bring inside something they can see out their window.
- Offer a photograph of a landscape similar that in which a patient has lived.
- Spend a few moments talking with a patient about some object/image of nature they have in their room.
(The latter two can be very evocative, facilitating a person’s life review process.)
May you find yourself refreshed, inspired, clear-headed and clear-hearted as you go about your day.
Jennifer J. Wilhoit, PhD is a writer, spiritual ecologist, & longtime hospice volunteer. She founded TEALarbor stories through which she compassionately supports people's deep storying processes. She lives on an island in the Pacific Northwest. You can find her on Twitter at @TEALarbor.
All photographs in this story are copyright @TEALarbor Stories.
Friday, March 17, 2017 by Pallimed Editor ·
Wednesday, March 15, 2017
By Amanda Hinrichs
As I enter my career in adult palliative medicine, I have been thinking more and more about the importance of language and the way we, the medical community, convey complicated medical information to patients, families, and other medical professionals. This is especially salient as our patients are living longer, and often more medically complex lives.
In early medical education, we are taught to briefly present a patient to our colleagues using age (along with gender and race/ethnicity) as the first piece of data. Within a few seconds of learning about a patient, we begin to create a mental image of them in our mind, without ever seeing the patient or hearing about their medical history. We often think very differently about patients when they are 90 years old vs 30 years old, regardless of the illness they may have. People who are younger have, on average, a better chance of recovery from illness, surgery, or injury than someone who is elderly; but I am not talking about a healthy 35-year-old teacher who develops a severe pneumonia and ends up dying in spite of aggressive and appropriate medical care in the ICU. The patients I am talking about who get labeled as “so young”may be far away from retirement age, but have lived with chronic, debilitating illness that many 80 or 90 year olds will never experience.
We often use life expectancy data as a general marker of how good our healthcare is. Overall life expectancy for those born in the US in 2015 is 78.8 years, and many of us use this number, consciously or unconsciously, when determining “old vs young,” even though this number does not factor in quality of life or morbidity. When we label seriously or chronically ill patients as “so young,” either in our minds or to our colleagues, we may not allow for an honest and open conversation about medical choice or prognosis until these patients end up in the ICU sedated on a ventilator, with little chance of leaving the hospital.
By labeling patients as “so young,” we may not allow patients to understand their age and their medical problems are not dependent variables.
By labeling patients as “so young” we may limit our recognition that the lives of these patients have often been paternalistically directed by tests, labs, procedures, and operations without the chance for open shared-decision making.
By labeling patients as “so young,” we may not accept death as an outcome.
As healthcare providers, we are continually trying to see our patients with an open mind, unbound by stereotypes, bias, or personal beliefs, and I think age is one more variable we need to be aware of as we strive to see our patients as honestly as possible. If you hear the phrase “so young” or say this phrase internally, explore what this means, and how this may affect the care of your patient. By doing this, we can respect the medical conditions our younger patients have lived bravely and strongly with for months, years, or their entire lives, and remember that age does not discriminate when it comes to illness.
Amanda Hinrichs is a palliative care fellow at the University of Minnesota. She is "kinda" on twitter @a_hinrichs
Wednesday, March 15, 2017 by Pallimed Editor ·
Wednesday, March 1, 2017
by Lyle Fettig
When debriefing after a difficult communication encounter led by a fellow or resident, I’ll often start by asking the trainee, “how do you think it went?” There are times when I thought the encounter went very well, yet the trainee leaves the room with a worried look. Perhaps the trainee clearly explained the medical facts, demonstrated ample empathy, and carefully talked about the next steps, so I’ll be a bit surprised when the trainee says, “It went horrible.” I’ll ask why, and I’ll get a bemused look in response. “Because I made the patient cry,” the trainee might say. Usually, when this happens, the trainee knows that it was the serious news that made the patient cry: A change in condition, a revelation about prognosis, etc. Deliberate reflection on skillful communication requires some understanding that while patients may respond differently to various communication techniques, we are ultimately not responsible for the patient’s emotional response to serious information. Even if giving the information was the ethical and pragmatic way to proceed, the physician is at risk for experiencing strong emotions that mirror those of the patient’s. The response of the patient and the physician’s experience of observing the response might make some second guess whether they have approached the conversation skillfully, even when they have.
“Attending: Medicine, Mindfulness, and Humanity” by Dr. Ronald Epstein, professor of family medicine and palliative care at the University of Rochester, is all about how physicians cognitively and emotionally process not only moments like this one, but also the more routine moment to moment emotional roller coaster of the practice of medicine. It’s a practice that is rich with cognitive complexity but always mingling with emotional intensity: Anxiety over making correct diagnoses or missing something. Frustration about electronic medical record systems. Helplessness when faced with symptoms we cannot explain, or sometimes cannot alleviate adequately.
We all experience these thoughts and emotions in our own way, and all develop methods (sometimes adaptive, sometimes not so adaptive) to respond to our inner experience. Dr. Epstein blends a mix of his own experience (which he describes with vulnerable humility), the experience of colleagues, and a description of some of his own research (example here) as well as related research in neuroscience, decision-science, and resiliency. The result is a readable, thought-provoking, useful, and comforting book that I’d recommend to any physician, or for that matter, any health care professional.
The book starts with a chapter on mindfulness in the practice of medicine and then a chapter on the related concept of “Attending” which describes our human ability to attend to a limited number of stimuli at once, leading to inattentional blindness (which none of us are immune to), and why this contributes to the challenges of medical diagnosis and management as well as why it may be so hard for us to recognize the experience of the patient at times. Even for people who are highly empathic, there’s still a risk of losing sight of the other person’s perspective when you’re lost in clinical reasoning, etc. He then further expands the discussion to the topic of uncertainty, and how we in medicine are certainty junkies, which brings with it a risk for crowding out curiosity. And that has negative implications.
Palliative care clinicians will especially appreciate his reflections on the concept of “presence” or “bonded resonance” in which two people are in touch and in tune with each other. Quoting philosopher Ralph Harper, he talks about the important role of presence in “boundary situations,” times of vulnerability and uncertainty. Philosophers and scientists alike have explored this resonance, and he describes two seemingly competing, but perhaps complementary, theories for how this happens. The first is “theory of mind,” where it’s thought that we theorize what might be going on in other’s minds, and might occasionally verify in communication if we understand their thoughts and feelings. The other theory is “embodied simulation” which posits that we “relive in our own bodies and minds the actions and presumed intentions of the other. He states that the current body of research comes to an intuitive conclusion: our cognitive and emotional lives are shared psychologically and neurobiologically, and boundaries between those sharing in presence are blurred.
This is a wonderment, and it reframes the feeling of dread that often goes along with breaking bad news. Yes, it's the information that makes the patient cry. It's information that the physician shares from his or her own mind to the patient's, who reciprocates with sharing emotion back to the physician. Although the physician has not "caused" the bad news, perhaps the feeling of responsibility for the patient's emotions stems from the blurring of boundaries?
I eagerly read the chapters on “Responding to Suffering” and “The Shaky State of Compassion” and agree with his supposition that while training in empathy is important, it only goes so far and there’s a real risk of emotional contagion- taking on the patient’s distress. Describing research about compassion, he describes “exquisite empathy” or compassionate action that may relieve the patient’s suffering and in concert, release the emotional tension that the clinician experiences. (I would include plans that come about after careful goals of care discussions as "compassionate actions", and even the process itself, that involves a lot of sitting with patients and grappling.) The good news is that there is growing data that compassion can be cultivated through practices such as loving-kindness meditation.
The book closes with chapters on resiliency in both the individual clinician and in the healthcare system with compassionate suggestions for his colleagues that don’t aim to “fix” the problems of our broken healthcare system, but do aim to help us build capacity to respond to it. Everything he writes about complements, integrates with, and bolsters important communication skills commonly taught by palliative care clinicians.
You’ll have to read the book to see some of his suggestions, but I’ll leave this review on a personal note. I personally am not immune to burnout and anxiety, as well as occasional dysthymia and rarely, depression. I remember when I was just starting, our team’s chaplain asked me to notice my breathing in the middle of a visit with a very anxious man who was in pain as well. To my surprise, I was holding my breath, perhaps an embodied simulation of what I witnessed. I think of the multitude of simulations we process each day, with patients, their families…and with colleagues, and this is a timely book for our field and for medicine in general.
I think this book offers a framework to consider how we might become more resilient, yet I recognize that someone out there might be reading this right now in the midst of a personal crisis. If that's the case, I could imagine that hope might not come as easily as you would want.
So, I have one last heartfelt note for everyone, but especially for my physician colleagues. It comes from the experience in the past couple of years of losing a physician colleague to suicide.
Recent research indicates that burnout in HPM physicians is something we should pay attention to carefully. It's an issue in medicine more broadly. Physicians have higher rates of burnout, depressive symptoms, and suicide risk than the general population. An estimated 300–400 physicians die by suicide in the U.S. per year. Don't wait until a crisis point, it's ok to think of it as a quality of life issue! Seek help if you are suffering. You may feel shame, but that's part of having depression and not because of who you are.
There are likely resources available to you locally at your own institution or in your community. If you are in crisis, you can also call the National Suicide Prevention Lifeline at 1-800-273-8255. There is no shame at all in reaching out- we need you in this world.
I'll leave everyone with a loving-kindness meditation:
May you be filled with loving kindness...
May you be held in loving kindness...
May you feel my love now...
May you accept yourself just as you are...
May you be happy...
May you know the natural joy of being alive...
Dr. Lyle Fettig is an Assistant Professor of Clinical Medicine in the Department of Medicine/Division of General Internal Medicine and Geriatrics. Dr. Fettig directs the IUSM Palliative Medicine Fellowship and works clinically with the Eskenazi Health Palliative Care Program.
Wednesday, March 1, 2017 by Lyle Fettig ·
Monday, February 27, 2017
by Christian Sinclair
Last night at the Oscars, there sure was a lot of excitement for many of my friends and colleagues, and I'm not just talking about the surprise ending with La La Land winning Best Picture, then losing it in a tragic mistake of envelopes, to another well-deserving film Moonlight. That is because many of my friends and colleagues are strong advocates and wonderful clinicians who are vocal about excellent care at the end of life.
The film Extremis, which was released in April 2016 at the Tribeca Film Festival, was nominated for An Academy Award for Best Documentary Short Subject, but up against top competition did not end up taking home the Oscar. The winner last night was a film about the Syrian Civil Defense volunteer rescue workers called The White Helmets. The nomination for Extremis should really be considered a win, because now many more people are aware of it, and palliative care providers can use it as a discussion tool.
Extremis offers a glimpse into the hectic and fragmented world of the Intensive Care Unit and the decisions doctors, patients and families make when the chances of survival reach the limits. The clinician who we follow is Dr. Jessica Zitter, a Critical Care Specialist and board-certified palliative care physician.
We see glimpses of her conversations with a diverse group of patients and families, never lingering on one discussion too long. Many phrases will feel familiar to palliative care and ICU staff as hope, miracles, uncertainty, and staying positive all struggle to push back against the overwhelming weight of illness. Initially, I found myself being a little too critical of some conversations. "I would never say that," I would think to myself, until I recognized that I have said those things, but they were in the a certain context. Director Dan Krauss, doesn't always give you the context of the conversation that we often get when we work at the bedside each day. When trust is built you can broach the most difficult topics.
I found it interesting the filmmaking team decided not to highlight the buildup of trust and relationships, yet there is a reason for that. The real focus of this film is not Dr. Zitter, it is the people experiencing the illness, the patient and their family. It takes a while, maybe even after you are done watching it, to recognize that the small windows into how people think and fell their way through a critical illness and possibly dying, is the important take away here.
I'll be very interested to see how palliative care and hospice teams use this film to spur discussions within their own team or organization, or to engage the community to think about these issues before they find themselves in Extremis.
You can catch Extremis now on Netflix.
Christian Sinclair, MD, FAAHPM, is the Editor of Pallimed, and amateur film buff who once got to meet Dr. Zitter and the producer Dr. Shoshana Ungerleider at a conference and forgot to ask to take a selfie with both of them.
Monday, February 27, 2017 by Christian Sinclair ·
Monday, February 20, 2017
by Christian Sinclair
The Annual Assembly of AAHPM and HPNA is right around the corner and if you are going to Phoenix, or staying home to keep things running smoothly, social media can help make your conference experience be transformative. Since 2009, the Assembly has been making use of Twitter to provide additional insight, commentary and sources for the multiple sessions each day. Now things are expanding to dedicated conference apps, Facebook and Instagram. And for the first year ever we have Twitter contests.
The official hashtag of the conference: #hpm17 (works on Twitter, Facebook, Instagram), use it in every tweet this week! To make it easy to include the hashtag in every Tweet, you can sign in to Tweetchat.com or tchat.io on your tablet or desktop. (Are you wondering why the hashtag for our interprofessional field/assembly is #hpm and not #hpc? Read more here.)
Pallimed Network Accounts
- Twitter (@pallimed) - run by Allie Shukraft, Kristi Newport and Christian Sinclair during the conference
- Twitter (@hpmchat) - run by Lori Ruder and Ashley Deringer during the conference
- Facebook - run by Megan Mooney-Sipe
- Facebook event page (unofficial) - Team effort
- Facebook event page (#HPMparty) - Team effort with GeriPal
- Instagram (@pallimedblog) - run by Christian Sinclair, with behind-the-scenes looks using Instagram Stories
American Academy of Hospice and Palliative Medicine:
Monday, February 20, 2017 by Christian Sinclair ·
Wednesday, February 15, 2017
By Lori Ruder
He moves over and she snuggles in close to her fiancé. She pulls their blanket over them. A special blanket made just for this moment. “I love you” she murmurs, soaking in his face and his warmth. “Goodnight lovebirds,” his mother teases as she turns out the lights.
This moment is both tender and tragic: tender because they are demonstrating their love for each other, tragic because this is happening in the ICU. Her fiancé is on life support and he is dying. He moved over because I moved him over to make room for her in his narrow hospital bed. I repositioned his ventilator tubing and central lines out of her way, closed the side rail behind her for support, and helped her pull their blanket over them. This blanket was made by ICU nurses for moments like this: to have something to offer when medicine doesn’t.
Using our own time and money, we gather together to make blankets. We make them in many colors and patterns, to match the many styles that come from all walks of life. They are simple fleece tie blankets, the kind a Girl Scout might make, but they are soft and warm. They are something soft amidst the harsh reality of critical illness and death, and something to provide warmth and comfort--to touch a loved one during last moments as if to capture their essence before they are gone. The blankets are a memento of touch to take with them when they leave this place and their loved one behind.
We give our blankets when we know the end is coming, after
the “I wish we had better news” has been said. And sometimes we give our blankets when it hasn’t been said yet. We know when it’s time usually before anyone else, before the family realizes or the physicians are ready to admit. We give them at our discretion; we do not need an order.
We have blanketed older patients so that husbands or wives of many years will have something that remains. We have covered a young mother dying from cancer with two, one for each of her preschool-aged children, so when they don’t have memories of their mother’s arms around them they will have her blanket and know it came from her. We provide markers so that those coming to say goodbye can write a message of love. When the patient dies we leave it to the family to decide where it goes. Some choose to leave it behind. Some choose to keep it with the patient after death. Many take it home with them. It is our gift of love in a time of sorrow, and how they choose to accept it is honored. Our hope is that these blankets will warm their hearts and cloak their grief.
“Blanket” defined as a verb means “to cover completely with a thick layer of something.” Synonyms include “cover,” “shroud,” “swathe,” “envelop,” and “cloak.” By using the term “cloak” my intention is not to cover or obscure grief, to pretend it isn’t there. By using the term “cloak,” I am referring to the Latin origins of the word, “pallium,” now in its current English form as “palliate.” To palliate means to make something less severe, to ease and soothe, without removing the cause. Our intention is to hopefully make grief less severe, to ease it in some small way through a simple gesture of cloaking the dying with a blanket created from caring.
On this particular night my patient already had a blanket, one that had been autographed with messages of love, one that had covered him and his mother earlier when she moved in close to say tender goodbyes. But I realized he had two important women in his life who needed comfort. His mother, who loved him before his birth and never left his side, and his devoted fiancée who dreamed of a future with his own children that would never come to be.
I took her out to our supply of blankets to choose the one just right for them. She instantly liked a light green one with polka dots. Although she was hoping for purple, his favorite color,our selection didn’t offer a purple one that was masculine enough for the strong man she knew. I told her, “He loves you. He’d be happy if you chose the one you really like.” And so it was the light green one that she snuggled under close to him, sleeping peacefully while his heart took its last beat. It was the green one that she clutched to her chest after he died, her face a blank slate of shock and disbelief. It is the green one that I pray she still holds tight in her time of grief, feeling the same sense of closeness and tenderness she felt on their last night together.
It was a simple fleece blanket, tied together by ICU nurses who bear witness to much suffering, sadness, and loss. It was something to offer that didn’t cause pain and only provided warmth and comfort. These blankets are tied together by our sincere desire to palliate the heartbreak of our patients’ families and, selfishly, our own.
Lori Ruder MSN RN is a Certified Hospice and Palliative ICU nurse in the Medical Intensive Care Unit at University Hospitals Cleveland Medical Center. Many times spoken words can’t give her heartfelt and heartbreaking experiences justice, so she writes them to remain resilient. If you’d like to summon your inner Girl Scout and help the cause you can find her on Twitter @LoriRuder.
Wednesday, February 15, 2017 by Pallimed Editor ·
Come one, come all to the 11th annual Pallimed / GeriPal party during the Annual Assembly of AAHPM and HPNA! And right after SWHPN's conference too!
In keeping with tradition, we will host it on the Thursday of the Assembly (Feb 23rd). We will start at Lustre at around 8 PM and move on from there to Hanny's at 10pm (and then who knows what). Like always though, these are rough estimates of time, so if you want to know the details, follow the hashtag #HPMparty on Twitter.
Also, feel free to invite and bring anyone, as this is no exclusive crowd.
Ways to follow:
by Christian Sinclair ·
Monday, February 13, 2017
by PJ Moon
A phrase in Dr. Dieter’s recent Pallimed piece, "Facing the Abyss: Planning for Death," usefully resurfaced a notion I’ve had for 12 years now. It started when a professor I was working under remarked how the "death denial thesis" may not really be valid anymore in geriatric/end of life publications and discourse.
Combing through the literature, my professor’s hunch rang true, but only faintly so. To be clear, it wasn’t that issues of human mortality were given special spotlight by journal editors and varying authors, but rather the matter was generally portrayed in ways that did not neatly fit the category of denial, cloaking, or marginalization. Instead of the so-called death denial thesis being eliminated, I perceived another thematic rhetoric rising.
Given the commerce of innovation in medicine and cognate arenas, emerging tools have enabled us to ‘manage’ death, hence rendering death-denial less marketable. I call this the death-management thesis.
Let me clarify the usage of the term ‘management’ in this context. Here, it does not mean an approach to our inevitable end where it is bravely confronted with solemn sincerity, strategy and resolve. No. Rather, death-management denotes a semi-deceptive scheme of managing-from-the-top what it sees as a nagging, irritating and pesky problem of existential impermanence, namely death. Colloquially, I’m using death-management as a reference to how we clamor to gain control over our end so we can manage it by manipulating related dynamics (e.g., pace of decline, labeling processes and conditions (as giving things a name can make us feel as having ‘mastery’ over it, etc.) and, basically, calling the shots so it is not as wild and scary anymore. And so, it is a management project of taming death. It is a management mission to make death submit to us via our innovative tools and techno-rational prowess. Death-management so declares: “Death, we own you and you are under our management!”
But wait, there is more. This line of thinking (manipulatively managing death) conjures a subsequent idea. Once you and I buy this death-management thesis, then it is no huge leap to land on the square of a "death-defiance" thesis. Ok, here’s the sequence: After we can manipulate death so to manage it any way we like, then we are liable to think we can defy it altogether. Shout it with me now, “We not only manage you, death, but we defy you too!”
What a claim.
Before we get carried away, a distinction is made between Hippocratic and Baconian paradigms.1The former is a view that human nature is to be "worked with" out of inherent respect. The latter is a view that human nature is a thing to be figured out towards overcoming and controlling it, to have victory over it, according to our will and whim. So, which appeals to you, dear reader: the Hippocratic or Baconian enterprise?
Whether death-denial, -management or –defiance, mortality rate for the human race is still running on full steam at 100%. Given this persisting fact, it is to our loss when death is denied. You see, when you and I deny death, we lose track of our constituent nature, or our inherent mortal state. When death is denied then we actually give death the upper hand. It just may be that death wants mortals to vigorously exercise the skill of denying its reality so it can eventually strike with greater insult and offense.
My humble encouragement to us all is threefold:
(a) please deny the denial of death, lest the impact of its promised arrival be felt much more pungently than necessary
(b) please rethink if it’s death that’s being managed or merely its common forerunners of certain kinds of pain, angst, slumber, etc.
(c) please take caution in defying death because wisdom tends to be about facing reality (including seeing through illusions)2 and not turning away from it.
In sum, I find it more worthwhile to live in light of intractable death by actively preparing for it in various ways today, tomorrow, and the next day, and thereafter until it comes.
1. Jecker, N. S. (1991). Knowing when to stop: The limits of medicine. Hastings Center Report 21,(3), 5-8.
2. McKee, P., & Barber, C. (1999). On defining wisdom. The International Journal of Aging and Human Development, 49(2), 149-164.
Paul J. Moon, PhD, is Bereavement Coordinator at Alacare Home Health & Hospice in Birmingham, Alabama, USA. Even apart from his professional role, he ponders much on his mortality, the afterlife, and how best to get ready. He cares to plead for you to consider doing likewise.
Monday, February 13, 2017 by Pallimed Editor ·
Saturday, February 11, 2017
Last year the NorthEast Palliatiors from Carolinas Healthcare shared part of their team wellness activity with a Valentine's day theme. This year they shared more Valentine's cards they made and even a team-built poem: An Ode to Palliative Care.
Since February is National Heart Month, and Valentine's is next week, we would love to see the creativity of your hospice and palliative care teams! I'm sure you have at least one Interdisciplinary Team meeting next week, and you probably have some time allotted for education or self-care/team wellness, so let's see what you can do!
Check out our slideshow below or our album on Facebook for some great examples!
Your Valentine's Day creations should integrate a hospice or palliative care theme. We encourage you to keep it positive and affirming, because this may reach a very wide audience and we want to put our best foot forward.
To share your #PallimedValentines with us:
1. Post it to Facebook, Twitter or Instagram
2. Add the hashtag #PallimedValentines
3. Tag us! @Pallimed on Facebook/Twitter, and @pallimedblog on Instagram (Optional, but it helps us find them and might get your post shared more quickly!)
4. Also follow and like us if you are not doing that already.
We'll feature some of the best ones here and across our social media platforms.
Saturday, February 11, 2017 by Christian Sinclair ·
Roses are red
Violets are blue
Palliative care, we dedicate these love words,
Solely to you.
You met us where we were at yesterday,
Even met with the patient and family again today,
Tomorrow you will meet as a given,
Forever and always.
Palliative care you came along,
Asked the tough questions like no one before,
Palliative care you spoke to my soul and captured me fully,
And forever more.
Palliative care I give you my heart,
To take care of my family and all that is me,
You lit a fire and spark,
Can you see?
Palliative care you ask me about QOL and make me happy,
As only the team approach can,
Having you in my corner and being with you,
My life is grand.
Palliative care, thank you
With all that is me.
Thank you my boo and my blessing,
for preserving my dignity, for all of eternity.
This team wellness activity is brought to you by The NorthEast Palliative Care Team (aka NorthEast Palliators), who are part of Carolinas Palliative Care and Hospice Group and Carolinas HealthCare System NorthEast in Concord, NC. Fun, creativity, and laughter are high priorities to their Team Wellness Plan.
by Pallimed Editor ·
Friday, February 10, 2017
By Vickie Leff
Susan Blacker, et.al provided an excellent article “Advancing Hospice and Palliative Care Social Work Leadership in Interprofessional Education and Practice.” 1 The authors describe the importance of interprofessional collaboration in palliative care, and strategies to address barriers. Increasing curriculum and practice presence are essential to improving this effort.
I would like to add and highlight a practical example of interprofessional practice that can:
1. help build resilience for nurses
2. serve as a model for clinical social work perspective and problem solving
3. increase the understanding of roles between CSW and nursing.
Implementing this suggested strategy can have an immediate, long-lasting impact.
As a palliative care clinician, I work with providers across the acute care system. I’m happy to see that there are more and more programs and efforts being made to help house staff and other physicians manage the emotional impact of our work 2.
I spend a good portion of my day talking with nurses about our patients, teams, impact of care, ethical decisions, and more. Nurses at the bedside spend many hours with patients and families.They often become the most trusted partner in care, witnessing a variety of difficulties both physical and emotional 3. There is, however, surprisingly little emotional or educational support for processing this emotional impact of this charged work – aside from brief lunchtime banter.
We know from research done with physicians that having structured, institutionally supported programs that addresses the potential burnout and compassion fatigue felt in medical practice are effective 2. How can we extend these programs n to nurses? There is no break in the day, no protected time: time set aside for a specific reason away from patient care. We must, therefore, follow one of the most basic foundations of CSW strategies--meet them where they are. CSW facilitated debriefings for bedside nurses in acute care hospitals can be challenging in design primarily due to the protected time limitations; however, they can be immediately impactful on several levels.
Suggested Program: Monthly Debriefings for Nurses
Providing monthly debriefings for nursing staff is one such strategy. A 30-45 minute facilitated opportunity allowing nurses to give voice to the difficult nature of the work they do and how it impacts them can be immediately impactful.
Some of the things I hear at meetings are:
“I was so upset when the transplant team dangled the carrot of transplant for this woman who is clearly dying."
“I just have to compartmentalize this stuff and try and leave it here”
“I can’t talk to my husband about my day, it’s too complicated to explain. Thank goodness I can talk to my colleagues!”
Led by a CSW familiar with the culture and the staff, these meetings are supported by the unit nurse manager. Meetings are open to all nurses on the unit, voluntary and confidential. Though this is not a support group, meeting are led consistently by a facilitator who is familiar with the unit culture. We schedule the debriefings for several months in advance, letting the staff know we are committed to the process, not waiting for an incident to happen.
There are many potential outcomes these debriefings:
- CSW and RN management work together to design the program
- Increases understanding of the RN and CSW role
- Provides resilience-building strategies for staff including self-awareness, availability of resources, normalization,education on burnout, compassion fatigue, and secondary trauma
- Learning from each other, breaking down stereotypes and communication barriers
1. Blacker SH, Barbara. Advancing Hospice and Palliative Care Social Work Leadership in Interprofessional Education and Practice. Journal of Social Work in End of Life & Palliative Care. 2016;12(4):316-330.
2. Back AL, Steinhauser KE, Kamal AH, Jackson VA. Building Resilience for Palliative Care Clinicians: An Approach to Burnout Prevention Based on Individual Skills and Workplace Factors. J Pain Symptom Manage. 2016.
3. Boyle D. Countering Compassion Fatigue: A Requisite Nursing Agenda. Online J Issues Nurs. 2011;16(1).
Vickie Leff, LCSW, ACHP-SW, BCD is the clinical social worker for Palliative Care at Duke University Hospital. She uses running and humor (not at the same time!) as her primary coping mechanisms. You can find her on Twitter at @VickieLeff.
Friday, February 10, 2017 by Pallimed Editor ·