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 email@example.com.
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 ·