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by Christian Sinclair

Politics and healthcare are occupying much of the news cycle this summer with all of the discussions around the possible repeal of the Affordable Care Act (AKA Obamacare). On one hand it can viewed as must-see reality TV with all of the drama and back and forth arguments with passionate opposition. Late-night TV hosts help turn the drama into satire and give everyone a good laugh and some entertainment. Yet it is important to see that this will greatly impact the care of the patients we see every day.

To be honest, it was not until a few years ago that I started to see the power of getting more politically involved as a physician. . I thought that dutifully voting was doing my part as a citizen. Nowhere in my education was it ever modeled for me that I should use my training and experience as a doctor to help influence public policy. Talking to legislators? I don’t have enough time. I’m a busy doctor. Emailing legislators? They probably hear from other people. Reading up on the pros and cons of new legislation and how it may impact me as physician? That is why I pay dues to professional societies and their lobbyists.

A few years ago, I got the chance to go to a Hill Day with the American Academy of Hospice and Palliative Medicine. The morning started off great with legislators and their staffers coming to tell us about the importance of the public voice in a thriving democracy. It was just like being back in High School in American History class with Mr. Horvath! We were given our assignments for the afternoon to walk around Capitol Hill and meet our Representatives and Senators and tell them why we supported the Palliative Care and Hospice Education and Training Act (PCHETA).

Despite speaking on the merits of hospice and palliative care to thousands of people over the years, this setup for a small meeting with political leaders was intimidating. As legislators, they seemed distant and removed from my everyday life, but yet they were critically important to the function of government. Reflecting back on the passage of the Medicare Hospice Benefit, I tried to muster up the courage of those empowered volunteers of the early 1980’s. Many of us would not have careers if they had not knocked on Senators doors and told the story of people at the end of life.

Sitting in Senator Roberts office, I waited with my advocacy team. We struck up a conversation with the other people waiting to visit the Senator. They were from the United Motorcoach Association and mentioned in the course of our small talk they had been here before. I was bewildered. What important policy issues could the United Motorcoach Association have to talk about? Were they more important than the care of hospice and palliative care patients? But then it hit me. They have every right to be here, to advocate for their interests, to represent their story. And if they were here telling their story and I didn’t show up today, Senator Roberts would have no knowledge of what I care deeply about. If we don’t show up and tell our story, then no one is going to care enough to reach out to us to find out more information and therefore other policy priorities will be advanced long before ours.

So knowing that physicians vote less often than the general population (and even less often than lawyers), how politically involved should we get on behalf of our profession and more importantly on behalf of our patients? This will be the topic of the July 2017 #hpm Tweetchat too so if you want to join the conversation, get on Twitter at 9p ET on July 26th. You can also add your comments below.

Christian Sinclair (@ctsinclair) is a palliative care doctor at the University of Kansas Health System, and immediate past president of the American Academy of Hospice and Palliative Medicine. He writes for Pallimed when he doesn't have other deadlines impending.

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By Paul Carr

Thank you to Dr. Naheed Dosani and the excellent team at William Osler Health Centre for inspiring this post.

What three words describe the essence of palliative care for you? When I asked my friends, family, and colleagues, the most common answers are: pain management, personal and spiritual support, and end of life planning. Those are all key components. But what quickly became apparent to me during my palliative care elective is that excellent palliative care providers embrace the role of enabling patients and families to make well-informed choices.

I have taken a long and untraditional route to arrive in the field of medicine. I’m over 40 and spent 16 years teaching elementary school before starting the MD program. As a teacher, I heard and read a great deal about the Hidden Curriculum: things that are not taught explicitly but are ingrained institutionally and learned through experience. Examples include behavioural protocols such as “Do not challenge your preceptors” even though you are told to question authority, and subtle reinforcement of gender roles in institutions that outwardly advocate for individuality. And I argue that patient choice is part of the Hidden Curriculum in palliative care.

Choice and Palliative Care

This is the World Health Organization’s (WHO) website's definition of palliative care:

It is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Following this definition is a series of bullet point items which explain what palliative care is or does, but without any reference to patient values, wishes, or choice. This is the essential mistake we all make in medicine. We guess at what will make our patients happiest, and then recommend the treatment most likely to attain that outcome. The danger is that if we don’t know what our patients want, we may end up providing them with longevity when they are seeking contentment and the company of family (or vice versa).

Patient Values and Choice In Medicine

An episode of the excellent Balado Critique podcast from Universitié de Sherbrooke reviewed the EXCEL and NOBLE trials, which compare bypass surgery to stents for treatment of heart disease. The experimental endpoints included all-cause mortality, repeat revascularization, stroke, and MI, which are all likely meaningful to some extent for a large majority of patients. But I was struck by the fact that these measurements may miss the point for many patients.They are inadequate for formulating a care plan, because they do not explore the goals, values, and wishes of each patient.

We love ‘hard numbers’. Government health agencies, private insurance companies and hospital executive boards love ‘em. They’re super for projecting on smart boards and backdrops during meetings and fundraisers. But what about the older patient who feels she has completed what she considers a good, satisfying life? What are meaningful primary outcomes for her? I searched the original text of the EXCEL trial for the words ‘pain,’ ‘satisfaction [with treatment or quality of life]’ and ‘happiness’ and I received a grand total of zero hits.

There have been attempts to quantify patient experience in research. As early as the late 1960’s, the concepts of Quality Adjusted Life Years (QALY) and Disability-Adjusted Life Years (DALY) experienced varying levels of acceptance (often by economists and accountants). More recently, research in dermatology has used specific scales such as Skindex and SCI which are based on experiential subjective self-reporting from patients.

The problem is that trying to quantify subjective experience is like trying to create a metric for favourite colour, or flavour of ice cream. The European Consortium in Healthcare Outcomes and Cost-Benefit Research performed an extensive study and concluded that “the hypotheses that found the QALY approach do not correspond to behaviour patterns observed in real populations.” This result was entirely foreseeable because we can no more predict what patients want than we can guess that their favorite colour is blue or their favorite ice cream flavor is rocky-road.

Enabling Patients To Choose

Consent law focuses on the ability to understand illness and treatment options, as well as the consequences of treatment selection or refusal. It sounds strange, but patients often are not aware of their own goals and values because they have not specifically paused to think about them or take inventory. I remember participating in a conversation with a gravely ill patient who asked initially for all available life prolonging options. My preceptor did not challenge the patient or recommend a course of treatment. She simply inquired, “Help me understand your choice. What is most important to you in your life right now, and what would your ideal end of life look like?” The patient talked about grandkids, spending time or even dying at home, and not wanting to be laid up in bed attached to machines. I don’t think my preceptor said more than 10 words in the whole conversation, but the patient had come up with some outstanding goals of care. Over the next couple days, the patient and the entire palliative team came up with a plan of care to meet those goals to the greatest extent possible.

Patient choice must emerge from the the Hidden Curriculum and take its rightful place as the basic starting point of all good medicine.

On the last day of my palliative medicine rotation, a young woman came in with a cake for the nursing staff on the inpatient ward. She explained that one year ago, her mother had died on the ward. At that time, the young woman was too sad but now she wanted to let the staff know they had provided her mother great care. She didn’t mention a single common research metric, but she smiled with gratitude and joy in remembering her mother.

References:

Balado Critique: Épisode 5 Études EXCEL et NOBLE. https://wwwusherbrooke.ca/baladocritique/archives/episode-5-etudes-excel-et-noble/
ECHOUTCOME Report Summary http://cordis.europa.eu/result/rcn/57938_en.html

Mäkikallio T, Holm NR, Lindsay M, Spence MS, Erglis A, Menown IB, et al. Percutaneous coronary angioplasty versus coronary artery bypass grafting in treatment of unprotected left main stenosis (NOBLE): a prospective, randomised, open-label, non-inferiority trial. Lancet 2016; Dec 3; 388 (10061):2743-2752. PubMed PMID : 27810312

Franco Sassi; Calculating QALYs, comparing QALY and DALY calculations. Health Policy Plan 2006; 21 (5): 402-408. doi: 10.1093/heapol/czl018

Stone GW, Sabik JF, Serruys PW, Simonton CA, Généreux P, Puskas J, et al. Everolimus-Eluting Stents or Bypass Surgery for Left Main Coronary Artery Disease. N Engl J Med. 2016 Dec 8; 375 (23):2223-2235. PubMed PMID : 27797291

WHO definition of palliative care:
http://www.who.int/cancer/palliative/definition/en/

Ice Cream Photo by Markus Spiske on Unsplash

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by Christian Sinclair

Working in an outpatient cancer center, I frequently encounter the conversation about whether the next cancer treatment regimen is ‘worth it.’ Patients and families consider may interpretations of worth; financial being one of course, but also physical side effects, the emotional toll of investing faith into ‘one more treatment’ and hoping that it works. These conversations are challenging as they weigh biological, medical, spiritual, social, personal, emotional and other issues, so there is no neat equation which can easily tell you if the benefits or the risks are greater.

These struggles were nicely summarized by Liz Szabo (@LizSzabo) in her article “Widespread Hype Gives False Hope to Many Cancer Patients.” From hospital billboards that emphasize eliminating cancer, to multitudes of ads for new drugs with new indications are we entering a hype boom in cancer care or have we really reached the next level? Szabo has this amazing quote form the CMO of the American Cancer Society:

“I’m starting to hear more and more that we are better than I think we really are,” said Dr. Otis Brawley, chief medical officer at the American Cancer Society. “We’re starting to believe our own bullshit.”

(A quick aside, I appreciate his frank assessment and swearing. This is not some vanilla, focused-group response. Also, thank you Kaiser Health News (and CNN) for actually publishing it without asterisks)

What is causing this new level of excitement in oncology? Jennifer Temel recently noted that the therapeutic nihilism started to change with the emergence of genotype targeted therapies like tyrosine kinase inhibitors in the mid-2000’s. Her opinion piece in JCO on the Prognostic Uncertainty in the Modern Era of Cancer Therapeutics echoes what I have heard at last year’s Palliative Oncology Symposium, and the Cancer Center Business Summit, as well as what my fellow oncologists are saying as we see patients. But cancer therapy has historically been through boom and bust cycles of hype, how is it possible to tell if this is any different?

Pinned Tweet of Dr Prasad

Another great voice to listen to is Dr. Vinay Prasad (@VinayPrasad82) who constantly applies the screws of scientific theory to poke holes in over-optimistic press releases from drug makers and academic medical centers about the next big drug. Follow him on Twitter and you’ll quickly learn a lot of the hype is not necessarily backed up by the strongest evidence, despite what you may see on TV or even in journals. I would imagine given the modest evidence-base in palliative care he would take the same approach to us, yet I have found his explanations helpful to me as a palliative care doctor working upstream in an academic cancer center where every week I am seeing patients on brand new drugs or relatively new drugs with new indications.

For those of you working in more upstream palliative care in outpatient settings or in the community, how are you keeping up with the latest therapeutic advances in oncology? I see that I have needed to learn a lot in the last two years in this new position and see a new challenge for upstream palliative care.

If you are interested in talking more about this, join the #hpm monthly tweetchat tonigth Juen 28, 2017 at 9p ET and join the Facebook Group started by journalist Liz Szabo 'Treating Cancer: Hope vs Hype.'

Dr. Christian Sinclair is a palliative care physician at the University of Kansas Cancer Center, editor of Pallimed. When not reading up on the latest imboblumimab, you can find him walking his dog Spud to the park.

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by Drew Rosielle


The Annual Meeting of the American Society of Clinical Oncology was last week. It’s been my observation over the years that much of the best palliative-oncology and supportive-oncology research is presented at ASCO each year, before it’s actually published (if it ever gets published).  So I always dig through the palliative/EOL/supportive/psychooncology abstracts each year to see what's happening. Below is a gently annotated list of the abstracts that caught my eye the most, for your perusal and edification. Undoubtedly, these are my idiosyncratic choices, and if you want to dig through all of them you can browse the abstracts by category here. A couple additional comments first.

One of the big headline trials was a supportive oncology trial showing that regular tablet-based symptom assessment in cancer patients prolongs survival.  Christian promises me he's going to do a deep dive into the symptom tablet trial so I won't really talk about it here.

It’s interesting however to compare it to one of the other major headlines which was about abiraterone for advanced prostate cancer. People went nuts for this study, although if you dig into the results they’re pretty modest (3 year survival 83% in the abiraterone vs 76% in the placebo group), but in cancer trials that’s typical. I’m not knocking the study, they are good results, I’d undoubtedly do abiraterone myself, but there’s often a big disconnect in the headline findings in cancer research and the actual, real, patient-relevant results. Lots of money to be made and spent on abiraterone, which is why it’s gotten so much press. Full paper here:http://www.nejm.org/doi/full/10.1056/NEJMoa1702900#t=abstract

Here are the other abstracts which caught my eye, loosely organized, and mildly annotated. (I should note that my annotations are summaries of the findings - keep in mind these are abstracts, not full publications that have been through peer review, we can't really look at the methods, so when I say that the abstract shows that X is effective for Y, that's me summarizing the abstract, not endorsing the veracity of the findings.) Also, if you're an author, and I misrepresented your findings, shame me in the comments and I'll append edits in the permanent post. 

1. A RCT of pretty high doses of lorazepam vs placebo, plus haloperidol for EOL agitation, showing that the addition of lorazepam helped. This got a lot of chatter on Twitter, especially about how it compared to the RCT of low dose haloperidol/risperidol for delirium.  I think it’s validation of the idea that it’s imperative to keep in mind the therapeutic goals with regard to delirium and agitation. Ie are we trying to sedate someone (=suppress the agitation behavior) or are we trying to improve the delirium? The first we can do, as this abstract shows, quite easily with a good dose of a benzodiazepine; the second we still lack any convincing data about any effective strategy in our late-stage patients, despite the widespread observation (belief?) that haloperidol & similar agents help.  Good stuff and I hope it's published in full soon:  http://abstracts.asco.org/199/AbstView_199_181607.html
  
2. A study looking at chemotherapy and palliative consultation in ICUs:  http://abstracts.asco.org/199/AbstView_199_192587.html 

3. Another study showing helpful effects of early palliative consultation in hospitalized cancer patients:   http://abstracts.asco.org/199/AbstView_199_190938.html 

4. A study looking at the relative stability of treatment preferences in advanced cancer patients over time:  http://abstracts.asco.org/199/AbstView_199_192725.html 

5. A study looking at Latinos & EOL preferences, including the generational effects after immigration: http://abstracts.asco.org/199/AbstView_199_193461.html 

6. A study about patient-caregiver agreement about goals: http://abstracts.asco.org/199/AbstView_199_192587.html 

6. A study looking at the natural history of fatigue in breast cancer survivors for 6 months. I wished they followed for even longer and hope they come out with data at years 1, 2, 3 and beyond: http://abstracts.asco.org/199/AbstView_199_182648.html 

7. A mobile CBT app for anxiety in cancer patients does very little: http://abstracts.asco.org/199/AbstView_199_194370.html 

8. A study looking at what healthy people say about whether they'd want 'palliative' vs curative chemo for AML, hypothetically speaking. Interestingly, responses seemed to be more fixed (fixed beliefs about whether chemo is worth it or not) than based on the information provided about different levels of side effects. This sort of research is fascinating, but I always worry that what healthy people say in a survey about a hypothetical question is very different from what they do when actually facing a life-threatening disease. The same problem with statements people make when they are healthy, and even put into health care directives. "Uncle Joe would never want to go to a nursing home." That sort of stuff - ie does it actually mean Uncle Joe would rather choose to die this month than go to a nursing home - how do we actually interpret the prior statements, etc. Anyway:  http://abstracts.asco.org/199/AbstView_199_192439.html 

9. A fascinating study about potential interactions between depression, and depression treatment, and length of stay in  hospitalized cancer patients:  http://abstracts.asco.org/199/AbstView_199_188306.html 

10. A cocoa-based balm for onycholysis in chemo patients. There were 2 onycholysis abstracts this year. Why not?  http://abstracts.asco.org/199/AbstView_199_186790.html 

11. A mildly promising pilot study lactoferrin for chemo dysgeusia:  http://abstracts.asco.org/199/AbstView_199_191178.html 

12. Several studies of olanzapine for chemo nausea/vomiting (CINV). One showing it's more effective for emesis than nausea?:  http://abstracts.asco.org/199/AbstView_199_185558.html. More data for olanzapine: http://abstracts.asco.org/199/AbstView_199_181353.html. And in case there was any doubt, here's a metaanalysis of olanzapine for CINV demonstrating its effectiveness:  http://abstracts.asco.org/199/AbstView_199_187470.html 

13. A follow-up, with longer term data, from the RCT of palliative care for stem cell transplant patients showing improvements in depression and PTSD, but not other outcomes, at 6 mo: http://abstracts.asco.org/199/AbstView_199_188285.html. Earlier publication here: https://www.ncbi.nlm.nih.gov/pubmed/27893130 

14. Predictors of aberrant drug behavior in a cancer center population (helpful, and it’s exactly what you’d expect it to be, because they are the same predictors in the healthy population): http://abstracts.asco.org/199/AbstView_199_192505.html  

15. Yes, transbuccal fentanyl helps for dyspnea: http://abstracts.asco.org/199/AbstView_199_181614.html 

16. A RCT of minocycline for chronic myeloma pain (!) which showed promising results (phase II, better trials are needed). I vaguely had a sense minocycline had antiinflammatory effects, but apparently it could have analgesic effects too. Really looking forward to a study which hopefully looks at long-term safety and efficacy: http://abstracts.asco.org/199/AbstView_199_186197.html 

17. I hadn’t known this but there is actually a RCT showing that l-carnitine WORSENS taxane CIPN. Ugh. I have never used it due to lack of data showing efficacy, but hadn't realized it was probably toxic and still see patients on it sometimes. If one needed reminding that all these herbs, supplements, and so-called alternative treatments aren't these bland, safe, anodynes this is a good reminder. Science-based medicine is what our patients need and deserve. This abstract is a follow-up to the study showing it was poison:  http://abstracts.asco.org/199/AbstView_199_184547.html 

18. A deeper look at the truly nasty neurotoxicities of anti-PDL1 drugs (the major class of cancer immunotherapies). Little is known about this (I've now seen one case) and we will see more and more of this as these drugs are more widely used:  http://abstracts.asco.org/199/AbstView_199_191534.html 

19. Finally, and whoa -- single fraction is as good as multi-fraction radiation for cord compression. At least in patients with poor long-term survival (median survival was 12 weeks in this cohort). I look forward discussing this with my rad onc colleagues, as it would be a very welcome option for patients with less than 3 months to live so they didn't have to spend 2+ weeks of that time getting radiation: http://abstracts.asco.o/199/AbstView_199_186591.html

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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.

I worry that the long history of hierarchy in medicine may lull us into forgetting we must stand and fall as a team. I have been at the table, filled with palliative care providers including physicians and NP’s, when news has come down that an additional social work position would need to be put on hold, and everyone immediately looked at me for my reaction. I was disappointed with the news, but surprised that everyone only looked at me. I said, “this should concern everyone, not just me as the social worker”. After all, it isn’t about one professional but all of us together providing the best care, with our distinct scopes of practice and shared goals.  Our programs are only as good as each member of the team and the care each can uniquely and synergistically provide.

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.

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.

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by Renee Berry (@rfberry)

• 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

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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 abbie.latimer@uky.edu.

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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.

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by Lori Ruder

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.