Monday, February 29, 2016

Pediatric Palliative Care - The Outliers

by Kevin Madden, MD

Just as in any medical specialty, there are “bread and butter” aspects of Pediatric Palliative Care – situations we encounter on a frequent basis that we are quite comfortable in dealing with.  Pain management, constipation, family meetings, resuscitation status and discussions about goals of care certainly are at the top of that list.


Well, I’m a zebra guy. 

What? 

Remember the old medical saying “when you hear hoof beats, think of horses not zebras”?  I’m a zebra guy.  I’m endlessly fascinated with the obscure, the rare and the unusual. 

This week’s Tweet Chat will be on topics that we do not confront with on a daily basis but will come across at some point in our careers.  Since they are infrequent, they lend themselves to a group discussion where we can learn from each other’s collective experience.





Dr. Kevin Madden is a palliative care physician at M.D. Anderson Cancer Center in Houston, Tx. He specializes in Pediatrics, and his research interests include opioids in children with advanced cancer. 

T1:  Pediatric Delirium: How do you diagnose delirium in a child?  Should we screen for delirium in children?  How do you treat delirium in children?

T2:  Outside the Box:  The use of non-traditional medications and non-traditional routes to alleviate suffering.  What have you done that the rest of us can “put in our back-pocket” to be able to use in a crisis or unusual circumstance?

T3:  Pediatric Palliative Sedation:  When do you consider palliative sedation therapy in children?  What medications do you use?  What ethical dilemmas have you encountered?



What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 3/2/2016 - 9p ET/ 6p PT
Host: Kevin Madden MD Follow him on Twitter @madden_kevin


If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

Photo credit: ZebraPen.com

Monday, February 29, 2016 by Niamh van Meines ·

Sunday, February 28, 2016

Why We Can’t Make Assumptions about Consciousness and Dying

By Lizzy Miles

A little over a year ago I wrote a Pallimed article called, "We Don't Know Death: 7 Assumptions We Make about the Dying." Having knowledge of our assumptions is a first step, but what do we do with that knowledge? Since I wrote that article, I have further contemplated the “so what” factor of the assumptions to develop suggested interventions.

This article is the second in a series of articles where I will take each assumption from the original article and explore the concept in greater depth to include implications and possible interventions. In my last article, I wrote about the assumption that if you have experienced a death, you know how death happens.

Here is our next assumption: You’re supposed to be unconscious when you’re about to die.

First and foremost I need to emphasize that I did not go to medical school or nursing school. I am a medical social worker. My point of view on consciousness is based on my experiences with the dying.

Why do we think patients are supposed to be unconscious before they die? Because that’s how it happens in the movies and on television.

Even our prior experiences may lead us to believe this is the norm. In fact, research cited in the Oxford Textbook of Palliative Medicine states that excluding sudden and unexpected deaths, 6-30% of patients are conscious 15 minutes before death.1

In the hospices that I have worked at, we generally have not used the term conscious or unconscious. The Webster’s dictionary definition of consciousness is, in short, “the state of being aware.” I believe we refrain from using the term “unconscious” in hospice because we have learned from our experiences that even actively dying patients do seem to have an awareness of activities in the room, as evidenced by minute facial gestures. That being said, the more commonly used term in hospice is “non-responsive.” Does it mean the patient cannot respond? Not necessarily. It may sometimes mean the patient is choosing not to react.

My first awareness of this phenomenon of someone “responding” when they were “non-responsive” was when I was sitting vigil with my great aunt Alice while she lay dying. Her heart rate was down to 30 and she had not responded to us for days. The hospice nurse told us she could still hear us, so we talked to her. Given her vitals, we did not know why her death was so prolonged. As it turned out, she died the very second her chaplain walked in the room. None of us had thought to call the chaplain, but in hindsight we realized her faith was strong and my great aunt must have been waiting for the chaplain to arrive.

Another time, I was sitting vigil with a friend of a patient. The friend was sharing all kinds of stories about their friendship. The patient was not responding to any questions or comments we made for over an hour… until we started to talk about the patient’s dog. Then the patient’s eyebrow lifted and her mouth moved as if she were trying to talk. We knew that her love for her dog inspired her to want to express herself.

Here is where one of our hospice staff challenges comes in. We want to educate the loved ones that the patient is still able to hear, often until the moment of death. Unfortunately, sometimes loved ones are frustrated with non-response and will provide increasingly aggressive stimulus in an attempt to get a response from the patient.

I have seen loved ones lift a patient’s eyelids, pound on a patient’s chest and vigorously rub their arms. It is very sad to see and often happens when the loved one has not fully had a chance to process that the patient is dying.

Suggested Interventions: 
•  Always introduce yourself to patient when you enter the room.
•  Inform patient what you’re going to do before you do it.
•  Educate loved ones of patient’s ability to hear until they die. 
•  Inform loved one of the patient’s common need to withdraw inward.
•  Set expectations that patient may not respond and to not expect a response.

There are some hospice diagnoses where patients are more likely to be alert closer to death. Patients with end stage heart disease likely will have their heart just stop some time. I had one hospice patient who was laughing and joking with facility staff during breakfast, and then the next time they went in to check on her, she had died. We did not have any indication that she was near death. When a hospice patient dies unexpectedly like this, it can be a shock for the family.

Suggested Interventions: 
•  Educate loved ones of patients with heart disease of the possibility of sudden death so that they are prepared.
•  Encourage these loved ones to not leave things unsaid. 

Perhaps the most unusual “consciousness” scenario is when patients have extended periods of apnea and then are aware and communicative. This assumption article is inspired by my own experience with a patient I was with who would have 45 seconds of apnea and then wake up and squeeze my hand and try to talk to me. When his family was sitting with him, he was nonresponsive and not interactive.

While this article is primarily about patients who are conscious before death, there is an alternative scenario that is equally challenging to families. Some patients have been known to have weeklong periods of “unconsciousness” (non-responsiveness) where staff and family assumes they are transitioning to actively dying, only to recover and live for months longer. I have seen this happen at least twice. Both times were emotional roller coasters for the family.

Suggested Intervention: Do not let consciousness or responsiveness alone be your barometer for determining “actively dying” status.

This work that we do in hospice and palliative care is humbling. To provide the best care possible for patients and families, we need to share what we know, but also what we do not know.

1 Doyle, D., Hanks, G. W., and Mac Donald, N. (1999). Oxford textbook of palliative medicine, 2nd edition. Chicago, p. 983.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW 

Image Credit: "Intubated McDreamy" from Grey's Anatomy screencapture
Photo Credit: "Spud" by Christian Sinclair (CC BY SA 2.0)

Note: To continue reading the assumption articles, the next one in the series  is: Some People Do Not Want to Be with Loved Ones During Time of Death (and that's okay)

Sunday, February 28, 2016 by Lizzy Miles ·

Tuesday, February 23, 2016

Dying to Know: Situating Death Education in Schools

by Kathy Kortes-Miller

Pallium Canada is back hosting #hpm Chat for the 2nd time! Last time we discussed the international Compassionate Communities (CC) model and the concept of Public Health Palliative Care. We chatted about conceptual clarity surrounding the CC model, illuminated CC projects happening around the globe, and discussed the next steps to making the CC model a reality in your community. This time, with the help from our Compassionate Communities Co-Lead, Dr. Kathy Kortes-Miller, we’ll be taking it one step further by discussing the concept of Compassionate Schools.

The CC model upholds principles of healthy communities where health is everyone’s responsibility, and therefore palliative and end of life care is also everyone’s responsibility (Kellehear, 2015). The Compassionate City Charter is a framework of 12 social changes that lead communities towards being compassionate cities. This international initiative was launched in May 2015. One of the 12 social changes identified in the charter involves schools. The charter states that “Our schools will have annually reviewed policies or guidance documents for dying, death, loss and care.”

Members of school communities know that all natural cycles of sickness and health, birth and death, and love and loss occur every day within these educational institutions. Most school communities recognize that care for one another at times of crisis and loss is not simply a task solely for health and social services but is everyone’s responsibility. As Ratner and Song (2002) state “as educators, we claim to prepare our students for life. We need to prepare them for death as well (p. 15).” But how can schools actively engage in this process? A Compassionate School is a place of learning that incorporates death education into its curriculum, school policies and approaches to providing a supportive community for students, teachers, staff and parents. Dying and death as a topic of study did not come into its own until the 1970s and since then has been sorely neglected at all levels of our education system. The intention of the inclusion of death within education is one of primary prevention (DeSpelder and Strickland, 2009).


Education will not prevent death as a normative life event but rather it will work to prevent some of the negative side effects of not understanding dying and death. Through educating about death, the goal is to inform students of all ages about dying, death and related experiences to reduce a sense of unfamiliarity (DeSpelder and Strickland, 2009, Wass, 2004, Morgan, 1995, Eddy and Alles, 1983) or fear of the unknown.

Pallium Canada’s Compassionate School initiative will target schools of all levels to galvanize their capacity to develop educational communities that have the knowledge, skills and resources to support their members as they face the reality of dying and death - their own and of those they love.

For more information on Pallium Canada’s Compassionate Communities, please register for our Community of Practice! We hope to see you Wednesday at #hpm chat to explore the topics below too!

Kathy Kortes-Miller, MSW, PhD (@kathykm) is a palliative care educator and researcher. She is a Compassionate Communities Co-Lead with Pallium Canada and official taxi driver for her two children.
  • T1 Dying, death, grief and loss frequent the corridors of our schools. How do we prepare students, teachers and our school communities?
  • T2 What are some of the challenges or barriers facing schools wanting to provide more death education to their students?
  • T3 My 12 yo. son's best friend is dying. What support should I expect from the school? What does the school expect from me, the parent?
  • T4 How can those who work in #palliative and #eol care best support schools to increase their death literacy and support one another?

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 2/24/2015 - 9p ET/ 6p PT
Host: Kathy Kortes-Miller, MSW, PhD Follow her on Twitter @kathykm

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

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

For more on past tweetchats, see our archive here.

This post was originally posted at Pallium Canada in conjunction with this #hpm chat.

Photo credit: Battlefield High School by Bhs_itrt via Wikimedia Commons

Tuesday, February 23, 2016 by Pallimed Editor ·

Monday, February 22, 2016

Dartmouth Atlas Shows Large Regional Disparities in EOL Care

by Karl Steinberg

The Dartmouth Atlas Project released its compelling new report, entitled “Our Parents, Ourselves” on February 17. The report discusses the aging population and its health concerns across the U.S., especially around end-of-life care, pointing out some areas where gains have been made and other areas where there is still much room for improvement. As with other Dartmouth Atlas releases, this fascinating report details geographic data among discrete regions nationwide—and not surprisingly, also demonstrates wide variation between regions in all of the parameters studied. For example, the percentage of people with dementia who have feeding tubes varied more than tenfold, from a low of 1.3% in Portland, OR, to 14% in Lake Charles, LA.

The authors did not attempt to define what ranges constituted “right care” for parameters like the number of ICU days in the last six months of life, but for most patients, it is intuitive that less ICU days generally suggests “better” care near the end of life. The same applies to number of healthcare encounters in the last six months of life, or number of different practitioners seen. Certainly for late hospice referrals (defined as admissions within three days of death), it would be ideal if nobody were referred for hospice so late—yet of course, it’s better to have some hospice than no hospice. And for other parameters like mammography in the elderly, the sweet spot probably isn’t zero since there are some very vigorous 75-year-olds who might benefit from screening even if the evidence doesn’t demonstrate a benefit in the whole universe of women 75 and up. For PSA screening in the elderly, though—considering that the evidence doesn’t even support doing it in younger people with longer life expectancy—probably zero would be a desirable goal.

As far as feeding tubes in advanced dementia, it’s pretty well established that they are not an appropriate intervention—they do not extend life and they do not improve quality of life, may be associated with numerous complications, etc., and are on the Choosing Wisely lists of “Don’ts” for AMDA—The Society for Post-Acute and Long-Term Care Medicine, the American Geriatrics Society, and the American Academy of Hospice and Palliative Medicine (I note in passing that the gastroenterology and interventional radiology organizations left it off their lists). Yet in real-life situations, it is often difficult to convince a family that it is not medically indicated to place a feeding tube in their demented loved one.

As we’ve grown to expect from the Dartmouth Atlas, the report is well-researched, colorful, and has plenty of references to evidence-based literature. There are other interesting demographic and insurance data by region that can really be intoxicating to drill down into, especially as they relate to our own local areas. For example, I was surprised at the worse-than-average percentage of late hospice referrals in San Diego County, considering the dozens of hospices and their high capacity and heavy marketing locally. The authors don’t give explanations for the disparities, but when we examine the data from our own areas, and how we shape up compared to our neighbors and to parts more distant, we should be looking for the reasons—and for ways to improve the care we give to our patients as they draw near to death.

Karl Steinberg. MD, CMD, HMDC, chairs the Coalition for Compassionate Care of California and serves as medical director for Hospice by the Sea in Solana Beach, CA, and for three skilled nursing facilities in San Diego County. He spends most of his time as a SNFologist and is best known for taking his dogs with him on rounds most days. You can find him on Twitter (@karlsteinberg)

Image Credits: Dartmouth Atlas "Our Parents, Ourselves" via fair use (education, critique). All Rights Re

Bynum JPW, Meara ER, Chang CH, Rhoads JM, Bronner KK. Our Parents,Ourselves: Health Care for an Aging Population. Lebanon, NH: The Dartmouth Institute of Health Policy and Clinical Practice, 2016.

Monday, February 22, 2016 by Christian Sinclair ·

Hospice Medical Director Certification Deadline

by Christian Sinclair

Just a quick reminder that the regular deadline to apply for the 2016 Hospice Medical Director Certification exam is today, Monday February 22, 2016. The cost for the exam is $1100 if signed up by today, but the actual final late fee deadline is March 21, 2016. So save a few bucks and sign up today. The test can be taken on any day from May 19-June 6, 2016. More details can be found on the Hospice Medical Director Certification Board website.

Being a hospice medical director is an important role with specialized knowledge. For those who think it is just an administrative task to sign papers, there is a whole lot more at stake. Working collaboratively with the hospice team to ensure high quality comfort care means physicians need to be trusting yet curious, evidence-based yet creative, available and ethical. As hospice services expand in the United States, it is reassuring to know that hospice medical directors (HMD) have a standard to maintain. The numbers are starting to grow, but we still have a long ways to go in this young effort.

If you are a HMD, I hope you will sign up for this and join the ranks of those who aim for a high standard. If you are a hospice administrator, I hope you talk to your HMDs about certification and provide the right incentives to make the process simple. If you are a patient or family, consider this certification as you choose the right hospice for you. If you are a referring physician to hospice, do you know if the hospices in your area of HMDs who are hospice medical director-certified (HMDC) or board-certified HPM physicians?

Last year had a passing rate of 77% with 200 hospice physicians taking the exam. So far we have a total of 500 HMDC. Yet we have over 5,000 hospices, so even back of the napkin math with 1-2 HMDs per hospice tells us we have a long way to go to get a high rate of HMDC. A majority of hospice physicians do hospice on a part-time basis in addition to primary care or long-term care work. Let's help cheer them on as they work with hospice.

More posts on HMD Certification on Pallimed can be found here.

Christian Sinclair, MD, FAAHPM is a palliative medicine physician, former hospice medical director and editor or Pallimed.






by Christian Sinclair ·

Friday, February 19, 2016

Who Wants to Tell Someone Their Loved One Is Dying?

Photo by John Flannery via Creative Commons
By Lori Ruder

Who wants to tell someone their loved one is dying?

Intensive Care Unit patients at an academic medical center are the sickest of the sick, so chances are someone will have to. These are heart-wrenching conversations in any instance, whether the patient is young or old. However, conversations regarding the death of someone well into their decades are no doubt a whole lot more palatable than those regarding someone who has their whole life ahead of them.

Before me was a young man in his mid-twenties who had been diagnosed with an aggressive cancer only six months prior to my caring for him. It was wildly metastatic, progressing through all treatments. He came to the ICU with progressive renal failure to be “tuned up” in hopes of strengthening him until the next round of treatment could start.

From the doorway I witnessed a gaunt, jaundiced young man who looked like he should be at home with hospice. Surrounding him were devoted family members. The nursing voice in my head instantly said, “This young man is dying, what are we doing?” Then he smiled.

And then the voice in my heart said, “Why would they want to give up?”

I spent that night shift getting to know and building trust with his parents, assessing where they stood in the process of realizing they were losing their son. Both were exhausted; his mother was nodding off in the chair. The patient was tired, sleeping in between interactions, his father lovingly helping him use his pain pump. He never complained although under the covers was a taut and rigid abdomen and 4+ pitting edema. And with each interaction I got a bright smile.

Who would want to tell them their son was dying?

The next day a family meeting was scheduled and apparently no one from the ICU team wanted to tell them. According to the day shift nurse, the meeting was a disaster with a lot of unnecessary talking and not much listening. No clear plan was made except to continue what we were doing and reassess tomorrow.

What I saw in the bed that second night was a young man with days to live; years of experience had honed my prognostication skills. Did we assume his family knew he was dying? I stopped and asked myself a few hard questions. What if it was my son in that bed?  What if someone knew that he had days to live, would I want to know? Wouldn’t I want the chance tell him all the things I wanted him to hear while he was awake enough to hear them so that he could respond with his own?  Wouldn’t I want someone to be honest? I realized it was going to have to be me.

In the past I would not have been comfortable taking that step, instead waiting for a physician to be the bearer of bad news. However I was in the middle of a Gero-Palliative Nurse Residency program where I was learning ethical principles and communication skills. I knew I had the right and responsibility to advocate for my patient. I knew that it wasn’t simply bearing bad news, it was giving the gift of honesty.

I spent the first two hours straightening his room, bathing him, caring for him. The simple task of cleaning his room, removing extra equipment, and making him more comfortable did wonders for his family. They were so thankful. It’s a delicate dance I do, an art form of quiet caring, listening, and trust building. I am very nervous about my performance. Will I be strong enough to get out the words they need to hear? When will be the right time? Will I miss my chance? How will they react?

I watched his Oncologist stop by, hoping this would be a great segue. He could start the difficult conversation and I could join in. But he sorely disappointed me, glossing over the obvious and saying, “Well, let’s see how things look tomorrow.” Tomorrow? What if tomorrow brings respiratory distress and a ventilator? Cardiac arrest and chest compressions? There weren’t too many tomorrows to look forward to.

I continued on with my dance, learning about what a good son he was, very smart, hardworking, so strong through it all, always ready with a smile. I knew that smile.

Who would want to tell them he was dying?

I would. The moment finally came at 3  a.m. when his mother awoke after I turned and repositioned him. I sat down next to her and asked if I could be honest about what I was seeing, because as a mother that’s what I would want for myself.
She agreed. I told her he was dying and that it would be soon, within a day or two. That I would hate to see him in any more pain or have more procedures. And that since he still wakes up she could say what she needed to say and so could he. I sat with her for an hour as she told me that they weren’t dumb, that they knew, how she had been ordering black sweaters in preparation.

That they knew in their brain, but how do you tell your heart? They were waiting for someone to tell them. Instead medical interventions kept getting offered. They were waiting for someone to tell them.

The next hour I spent with her, listening to her love her son and be so proud of him, helping her grieve and prepare for what would happen in the next day was one of the most special of my nursing career. I arranged for a transfer to the Oncology floor they were familiar with so that they could be with the staff they knew, in the comfort of a nice big room. He passed away at 9 o’clock that night.

Year after year nurses are ranked as the most ethical and honest profession. Bedside nurses have 24-7 intimate contact with patients and families. We are in the trenches with them, we know their situation and what they are going through and have been through better than any other medical professional involved in their care. We see them at their weakest and most exposed and vulnerable, yet we provide as much dignity as possible.

Why wouldn’t we be some of the best people to broach such a difficult subject? Palliative Care training and knowledge gave me the moral courage to take charge and do and say what many times I waited for physicians to do. Empower your nurses through training. Give nurses the knowledge, the confidence, and the power to make a difference in the very vulnerable population of those who are dying. Many are waiting for you to open that door so that they can accept your gift of honesty. My experience reaffirms my true belief that while it can be very rewarding to help someone live, it can be just as rewarding, if not more, to help someone die.

Lori Ruder BSN, RN, is a Certified Hospice and Palliative bedside ICU nurse at University Hospitals Case Medical Center and an Advanced Practice Nurse student at Case Western Reserve University.  She encourages all bedside nurses to be certified in Palliative Care because it is what they do every day.  In her free time (what’s that?!)…she will let you know when she finishes grad school. On Twitter: @LoriRuder

Friday, February 19, 2016 by Pallimed Editor ·

Wednesday, February 17, 2016

Book Review: The Good Death: An Exploration of Dying in America

by Anna Dauer

The Good Death: An Exploration of Dying in America
by Ann Neumann - released 2/16/2016

In the wake of her father’s death, author Ann Neumann took on a project to cope with her own grief and dissatisfaction, ultimately examining death in many facets in American culture in her debut book, The Good Death. Her father’s death, wrought with delirium and in a hospice facility instead of at home, against his and her wishes and hopes for his experience, prompted Neumann to explore what comprises a good death, leading her to volunteer with hospice, attend conferences and rallies, and investigate this emotion-laden issue in a multitude of settings. Her firsthand experiences with rights groups like Compassion and Choices and The Terri Schiavo Life & Hope Network reveal an intimate look into organizations, personal experiences, and heavy and often divisive issues related to end-of-life in this country.

At once detailed and accessible, The Good Death chronicles the history of the modern American death, including landmark cases the reader will recognize as having changed the course of media portrayal of living and dying in America. Neumann deftly navigates these situations and humanizes all sides of arguments for what makes a good death or life. Through key events over decades, Neumann weaves vignettes of patients’ “close calls,” tragedies, and challenging decisions to highlight the personal, medical, legal, and challenging issues of dying in America today. She notes how experiences may differ by culture or socioeconomic environment and describes what death looks like for some more hidden from daily culture, but does not offer what a good death might mean outright.

While not prescriptive about how to provide care, at times even noting hospice philosophy as patronizing, Neumann provides a descriptive, moving base of knowledge for beginning to acknowledge the work to be done to improve the quality of dying in America. Her chapters’ titles pay tribute to a meaningful situation or story, but belie the impactful prose that illustrates the experiences she recounts:

  • Terminal Restlessness
  • Mortality Parade
  • Priceless Days
  • Double Effect
  • Hunger and Thirst
  • A Small but Significant Minority
  • The Most Vulnerable
  • Dying Inside
  • A Good Death

Spoiler Alert: Neumann does not define a good death. Her work won’t let us off so easily as that. But her writing will enlighten, inspire, and potentially enrage readers who are interested in the topic so often swept aside in our culture, despite its gravity and pervasiveness.

A must-read for physicians and those passionate about care for the dying in this country, The Good Death provides additional context outside the specific realm of health care, or rather reminds us how we might impact the daily living and dying for all Americans, no matter socioeconomic circumstance or credo.

More background information can be found on Ann Neumann's website: http://annneumann.com/ and you can find her on Twitter @otherspoon.

Anna Dauer, MD, is a hospice and palliative medicine fellow at the University of Kansas. This is her first contribution to Pallimed. A Kentuckian and an avid NPR listener, she enjoys a good dinner with friends at home or out. You can follow her on twitter: @DauerHPM.

Interested in writing a book (or film) review for us? We would love to see it! Check out our Pallimed Opportunities page for more info.

Ed Note - Links to the book are Amazon Affiliate links which go to support Pallimed with a small percentage of your purchase.

Wednesday, February 17, 2016 by Pallimed Editor ·

Tuesday, February 16, 2016

Palliative Care and Cardiology

by Staci Mandrola

As a palliative care doctor with a cardiologist husband, we have some interesting conversations after work. Recently John and I have been working on talks to engage cardiologists, cardiac APRNS, PAs, RNs and social workers in end of life issues particular to people living with heart failure. We both recognize from our work that management of distressing symptoms, discussion of goals of care and psychosocial/spiritual support for people living with heart failure and their families can do much more good if employed over years rather than days or weeks. Yet so often, palliative care is mistakenly viewed as only for dying people and that hospice care is only for dying people ready to admit they are dying and give up.

So my talk focuses on correcting misinformation: “When to say when: What is the difference between palliative care and hospice.” Ultimately, this is a challenge to change the perception that palliative care and hospice are about “when to say when.” I’m interested in hearing from others about strategies can we employ as palliative care teams and as cardiac teams to involve palliative care early in the life of a person dealing with heart failure, ideally from their first hospitalization.

Included in the talk is a case for discussion with two variables. A 62yo man with end stage heart failure is dependent on inotropes and not a candidate for heart transplant due to multiple comorbidities. His primary cardiologist had recommended a VAD (ventricular assist device). In question 1, this man is awaiting the arrival of his first grandchild; his heart’s desire is to meet her. In question 2, the man has completed his life’s work; he had confided in the hospital chaplain that “he is ready to go.”

I showed my idea to John and his comment was “no cardiologist is going to ask about that stuff!” It gave me pause to reflect - Do they? Should they? Should all persons who give healthcare to people with serious diseases elicit goals of care? How do we help foster this practice?

John’s talk is “ICDs: When we should…and when we shouldn’t.” ICDs (implantable cardioverter defibrillator). are life saving devices with proven value in selected people. Yet, the trials demonstrating benefit of ICDs enrolled mostly younger men without other serious diseases. We see people with heart failure over time are increasingly burdened with comorbidity. So how do we frame an ICD’s benefits and risks in older, debilitated people who have multiple comorbidities and a shorter expected lifespan? Maybe one helpful factor to elicit is returning to the issue of aligning therapy with a person’s goals.

Would there be value in having a palliative care consult before ICD implantation or generator change in this group of people?

I hope you join John and I as we host #hpm chat Wednesday night to talk about these issues in palliative care and cardiology.

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


T1 How do we encourage early palliative care consultation for people dealing with heart failure and dispel the myth that palliative care is only for actively dying people?

T2 Should cardiac teams routinely ask about goals of care?

T3 Should all people with heart failure have a palliative care consult before ICD implantation?

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 2/17/2015 - 9p ET/ 6p PT
Host: Dr. Staci Mandrola  and John Mandrola 

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

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

For more on past tweetchats, see our archive here.

Photo credit: "Searching For the Answer" by Erica Frechman and Carolinas Palliative Care and Hospice Group - Used with permission under CC BY SA 2.0
Image Credit: #hpm chat Feb 17, 2016 by Christian Sinclair for Pallimed CC BY SA 2.0

Tuesday, February 16, 2016 by Pallimed Editor ·

Thursday, February 11, 2016

Be My Valentine! (Palliative Care Style)

In the afternoon, the team gathered round a festive red and pink table, surrounded by hearts and sweets.

The morning was filled with the hustle and bustle of Palliative Care, no easy feats.

Navigating the patient’s course and determining their wishes,

Unrelieved pain, intractable nausea, constipation, and moral distress, the nurse dishes.

Finding out what matters most, best possible day, and providing support,

Coordination of care and communication, both often out of sort.

Advocating for the patient and providing compassionate care,

Palliative care is not for the weary, but those who dare.

The team stops to celebrate the holiday of L-O-V-E,

Valentine’s Day reminds us that love and our wishes are key.

These cards are inspired by the work we do,

Dedicated to the patients, families, and Palliative Care teams- whoo-hoo.

And finally, roses are red, violets are blue,

Love, kisses, and Valentine wishes.

----

Thank you to the palliative care doctors, nurses, social workers, chaplains, medical assistants, and support staff! You are the culture changers, the difference makers, the patient and family advocates! Never forget that your work extends beyond the hospital walls, the clinic doors, and the community roads.

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 in Concord, NC. Fun, creativity, and laughter are high priorities to their Team Wellness Plan.

Photo credits: Erica Frechman and Carolinas Palliative Care and Hospice Group - Used with permission under CC BY SA 2.0

Thanks to Erica Frechman for sharing this team activity with us. Below are some of the cards they created as part of team wellness. Maybe this will inspire your team to consider a similar activity? Let us know if you do! - Ed.











Thursday, February 11, 2016 by Pallimed Editor ·

Tuesday, February 9, 2016

The New World of Outpatient Palliative Care

by Kimberly Curseen

As the field of palliative medicine expands much attention and resources have been placed on inpatient consultation, with very positive results for patients and the health care system. We can now see access to inpatient palliative care is becoming a standard. The natural progression is to then extend the same important resource to patients in the outpatient setting. Outpatient palliative care provides resources for symptom management for patients and families going through aggressive and maintenance treatments for their serious illness.

Studies for the last decade have been demonstrating the effectiveness of early palliative care in improving patient quality of life and reduction in acute care resource utilization at end of life. Although results of the impact of outpatient palliative care may vary in the literature, it is consistent that these programs improve aspects of quality of life that patients consider to be important.

The Temel study in the New England Journal of Medicine "Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer" is one of the most cited studies showing the impact that early longitudinal palliative care can have on patient's quality of life. Patients were randomized to integrated palliative care with oncology care vs standard oncology care. The early palliative care intervention resulted in improved quality of life and mood in addition to less aggressive care at end of life and possibly prolonged survival for patient receiving the intervention.

A study in Archives of Internal Medicine in 2004 "The Comprehensive Care Team: A Controlled Trial of Outpatient Palliative Medicine Consultation" showed improve outcomes in spiritual distress and dyspnea but not in pain or depression. Another study in the Journal of Palliative Medicine in 2012 "The Impact of an Outpatient Palliative Care Consultation on Symptom Burden in Advanced Prostate Cancer Patients" showed that in their preliminary data patients had improvement in pain, drowsiness, fatigue, depression, sleep, sense of well-being, and anxiety.

In 2013 the Journal of Palliative Medicine published "Moving Upstream: A Review of the Evidence of the Impact of Outpatient Palliative Care" which reviewed the current literature up to that point on the impact of outpatient programs. The evidence supported that outpatient palliative care could "...1) improve patient satisfaction, 2) improve symptom control and quality of life, 3) reduce health care utilization, and 4) lengthen survival in a population of lung cancer patients".

With a growing body of literature supporting the need for outpatient palliative care, in addition to other health professions accepting that earlier integration of these services is important for patients, we as a profession are continuing to discuss how best to meet this growing need. Outpatient palliative care poses a variety of challenges for sustainability. Some of these include:

  • What defines outpatient palliative care? What are the core team members that must be available to patients to be an outpatient palliative care clinic?
  • How does a clinic continue to financially support non-billing members of a team?
  • Does the team assume primary symptom management or write recommendations?
  • What is our role in complex opioid management?
  • Should outpatient palliative care providers have training in addiction medicine?
  • Do patients transition out of outpatient palliative care?
  • How do we interface with primary care providers? Are we the primary providers for the seriously ill?
  • Who qualifies for outpatient palliative care? What defines a "serious illness"?
  • Should clinics be embedded in specific specialty ie oncology, geriatrics, cardiology etc or stand alone?
  • What guidelines are we following for symptom management? Could a patient move around the country and receive the same standard of care from clinic to clinic?
  • Are our fellows adequately trained to assume non-academic outpatient palliative care positions?
Practicing outpatient palliative care has been the most rewarding work of my life and I cannot imagine doing anything else. However, I find myself often concerned with whether my clinic is providing the standard of care our patients deserve. I find myself often with faced with challenging questions about how to deliver effective care with limited resources in addition how to protect these resources in fiscally troubled times. This year at the AAHPM annual meeting in Chicago several members will be attending as exploratory to meeting to develop an Outpatient Palliative Care SIG. I am hoping that it will help develop a network for Outpatient providers to share the challenges and solutions to issues that many of us are facing. (If you are a AAHPM member see AAHPM Connect for more info.)

Please join us for #HPM tweetchat to discuss this very important topic Feb 10th at 9:00pm.

T1: What defines an outpatient palliative care? Is a single provider enough?
T2: What are the challenges to sustainability of outpatient palliative care clinics?
T3: Should outpatient palliative care providers be trained in addiction medicine?

Dr. Kimberly Curseen is an outpatient palliative and geriatrician doc in Georgia working to advance access to quality palliative care for people with serious illness. 

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 2/10/2015 - 9p ET/ 6p PT
Host: Dr. Kimberly Curseen

 for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

References:

Michael R et al. The Comprehensive Care Team A: Controlled Trial of Outpatient Palliative Medicine Consultation. Arch Intern Med 2004; 164(1): 83-91 OPEN ACCESS PDF

Michael R et al. Moving Upstream: A Review of the Evidence of the Impact of Outpatient Palliative Care. Journal of Palliative Care Medicine. 2013, 16(12): 1540-1549

Temel J et al. Early Palliative Care for Patient with Metastatic Non-Small Cell Lung Cancer. N Engl J Med 2010; 363:733-742 OPEN ACCESS PDF

Yennurajalingam S et al. The Impact of an Outpatient Palliative Care Consultation on Symtpom Burden in Advanced Prostate Cancer Patients. Journal Of Palliative Medicine 2012; 15(1): 20-24 NOT OPEN ACCESS

Image Credit: Outpatients via www.tamesidehospital.nhs.uk. All Rights Reserved
Image Credit: #hpm square by Christian Sinclair for Pallimed. CC BY 2.0

Tuesday, February 9, 2016 by Pallimed Editor ·

Monday, February 8, 2016

What Would Any of Us Want?

by Amy Getter

In the recent JAMA article "What would mom want?" I was saddened to read that the family was so shocked at the burden of caring for a dying family member. Since medical technology has removed the expectation of dying in the home in recent years, many people have not learned about caring for loved ones from prior generations (my own mother’s mother died in the hospital, but my mother’s daughters thanks to hospice had the opportunity to care for her in the home). For a first time experience as caregivers in a family, shock is but one of the many difficult emotions that will be experienced undertaking care of a dying loved one. For any family undergoing a death in the home, it is anguishing and fearful and the exhausting final days take a tremendous toll on everyone. This is what hospice care is supposed to assist families with: knowing beforehand what to expect, understanding best possible ways to manage all the advancing care needs of a bedbound person in the throes of dying, using both pharmacological and non-pharmacological means to promote comfort, and providing the emotional support to family members undergoing likely the most difficult days of their lives.

Morphine, as we all know, gets a very bad rap, thanks to the internet and people’s misunderstanding of its use, and also happens to be one of the favorite hospice medications to manage pain and shortness of breath at the end of life. How many times I have heard family members express fear of small doses of morphine, both that the loved one might become addicted, and that they could overdose them…not the least of which is the fear of giving the last dose (someone will in fact be the person to do this). The family member who suggested a fatal dose of morphine reflected a similar thought expressed too often by families after the death: the belief their loved one died as a result of morphine “overdose” that was initiated by hospice in the end days.

As a hospice nurse, I have worked in several agencies among a number of wonderful professional staff on the hospice team. But something none of us who see death on a daily basis can become complacent about is the fact that dying, though a universal and “normal” experience, has an inherent level of suffering and angst for those who are dying and those who are caring for them. There seems to be nothing “normal” about it, when you are the one staying up during the night cleaning mom’s mouth out, putting drops of medicine in, and watching the horrible rise and fall of agonal breathing.


What would any of us want, as we lay dying? To be kept clean, as this is part of providing dignity, to have our loved ones near, to have the symptoms associated with dying managed as best as can be, to die in peace, (or to die while we sleep, to be in our own home, or to hasten our dying, or prolong it)? These seem simple enough requests, yet any of us who have been present during the active dying phase of illness know how often it is in fact a great effort to keep a patient’s pain at bay, while maintaining clear thought, and reduce shortness of breath yet not have to overly sedate, and deal with the advancing care needs of a person who is bedbound and incontinent. And ultimately to advocate for the person who is dying, so that their wishes can in fact be followed.

Dying is indeed a process. It takes some people many, many days of actively dying to actually take their last breath. Families are exhausted and burdened with the care of a dying loved one, twenty four seven times the many days and weeks of a terminal illness coming to a finale. No one should underestimate how difficult the task of dying is, for the one who is dying, and those that provide the care. And hospice staff need to be available as much as possible to show family how to minimize suffering at the end of life (not just be the nurse on the phone who tells a concerned family member who calls to report loud, gasping breathing, that this is a “normal part of the dying process, and give another dose of Levsin or turn them on their side”, but be the staff who show up even though not much more can be “done” other that provide a calm presence).

Though we each of us only lose one mother, I am reminded of all the mothers I have cared for in the years of being a hospice nurse. Some mothers I have sat with as they lay dying have wanted more pain medicine, but their adult children worried about them becoming too somnolent. Some mothers have told me they wanted to use physician assisted dying, but had families and/or physicians who could not abide this decision. Some mothers were too young when they died to see their children grow up, and others held their dying children in their arms. Some mothers have been overwhelmed with guilt at the burden they feel they have become to their family. Other mothers have had an expectation even though they caused their children tremendous grief in the live-in years that those children “owed them” the day to day care as they became infirm. Some mothers died alone, estranged from their families. Some mothers had the ability to hang on long beyond anyone’s imagination, to have a new grandchild placed next to them. I have listened to a daughter tell me how hard she tried to have a genuine conversation with her aging parent about end of life planning, and how quickly her mother changed the subject to talk about the next family dinner. And I listened to my own mother as she told me only 24 hours before her death that she would hear us, even when she couldn’t answer, and to remember that as she lay dying.

Having the conversations about life coming to a close, and the many roads one may choose on the journey, needs to be part of how we provide care for anyone with a life threatening illness. The question “What would mom want?” can and should be asked long before mom is dying. I was blessed to have a mother who expressed her desires clearly to her daughters before she lost the ability to do so. Perhaps the greatest gift our mothers give us is telling us what they want as their life ebbs, how much care, how awake they want to be, how they hope to die, while they can still express what they want. And perhaps our greatest gift is to listen.

Amy Getter, MS, RN, CHPN, is a hospice and palliative care nurse consultant who shares end of life stories and lessons learned at hospicediary.com

Photo Credit: Carrie Hoekema Smith via the Pallimed Facebook Page (used with permission)

Monday, February 8, 2016 by Pallimed Editor ·

Thursday, February 4, 2016

Celebrate National Women Physician Day

by Meredith MacMartin

February 3rd, 2016 is the First National Women Physician Day, held on the 195th birthday of Elizabeth Blackwell, the first woman to receive a medical degree in the United States. - Ed.

As a palliative care doctor, most of my professional life is spent with patients and families dealing with the physical and non-physical challenges of serious illness. I have sat with many patients and stood next to their families as last breaths were drawn. Death and dying is not the only thing I do, but it’s a substantial part of it. So it’s interesting that for me, being a doctor is closely linked with the beginning of life. I’ve never been a doctor without being a mother. My oldest son was born at the beginning of my fourth year of medical school and he was 13 months old when I started residency. For me, doctoring has been entirely about discovering new life at home, and learning to recognize the end of life at work.

As a doctor, I’ve taken overnight call through three entire pregnancies, and went back to work when my children were weeks old. I’ve pumped breast milk in rooms without locking doors, 10 minutes at a time in the middle of rounds when I had to, written notes and spoken to colleagues on the phone while pumping, and spent literally six hours at a patient’s bedside instead of pumping because they needed me there (needed to change my shirt after that one). I’ve rounded while miscarrying. I’ve spent Mother’s Day in the hospital on call, when my husband and son brought me dinner and flowers, which a nurse then threw away (I cried right in the middle of the floor). I spent my youngest son’s first Christmas in the hospital with my residents. I listened to my fellow residents tell stories about their post-call nights out with one another, as I went home to my little family. Being a doctor and a mother has been physically demanding, and sometimes intensely emotionally painful.

But...on those days when I come home sad and tired, with no greater wish than to pull my head into my shell and hide, I have little hands holding mine. When I want to be hard and keep the world out, I have three little people who need me to be soft. Their joy in discovering a new skill reminds me that even when things seem bleak, there is the possibility of growth. Their frustration with their inability to do the things they want to do reminds me that everyone wants control over their situation and giving it back can be the best medicine. Over and over again they teach me that nothing in life is perfect and that the most important you can do is show up and do your best. Being a woman and mother is not incidental to my doctoring but lies at the very core of it. I’m thankful that I’m a woman and a mother in a field which has been welcoming of what I bring to the table. And as the 7th doctor in my family and the first woman, I’m thankful for women like Dr Elizabeth Blackwell who blazed a trail that led me to this work and this life.

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

Thursday, February 4, 2016 by Pallimed Editor ·

Wednesday, February 3, 2016

Advice to the Presidential Candidates on End-of-Life Care Issues

by Christian Sinclair

Tonight at the Democratic Town Hall, a New Hampshire voter, Mr Jim Kinhan asked a very important question of candidate Senator Hillary Clinton about care at the end-of-life and personal choices. While his question may not have been direct, gauging from Mr. Kinhan’s recent editorial in the Concord Monitor, it appears the focus of the question was intended to be about the challenging debate on physician assisted death. (Full Transcript here - Key Portion excerpted at the end of this post)
This can clearly be a vexing question for any presidential candidate in either party. So I’m here to offer my guidance and expertise on how to best answer this question that will actually do the greatest good for the greatest number of people.

Let’s look again at key points in Mr. Kinhan’s question to make sure we are addressing his concerns:
  • He accepts that his prognosis is limited, but notes that he is still active and functional.
  • He is open about his spiritual needs.
  • He is looking for leadership to advance the public discussion around personal health care choices.
  • He voices concerns not only for the patient but also the caregiver.
  • He wants life to be enhanced but also the end-of-life to have dignity.
So Democratic and Republican presidential candidates, here is how you can answer this question:


===BEGIN===

Thank you for sharing your personal story Mr. Kinhan. To see that a serious illness won’t prevent you from advocating for important issues is inspiring to me and I’m sure this whole auditorium.1[Applause]. You mentioned personal choices and dignity for those with advanced illness and a possible poor prognosis. Our health care system is designed to use the most advanced diagnostic tools and cutting-edge therapies. And while these can be very expensive even putting people into medical bankruptcy, we often fall short on providing the things that matter most to patients and their families.

One growing new area in healthcare finding ways to bring value and quality (and without staggering cost increases) is palliative care. You may not know very much about palliative care, but when Americans find out about it, over 90% want palliative care.2

A doctor, nurse, social worker, and as you mentioned spirituality3, a chaplain, and others are on your side; spending time with you; skilled in communicating tough issues; relieving your symptoms and helping support you and your family. But right now we only have 1 palliative care doctor for every 1,200 people with a serious illness. And we need more social workers, nurses, chaplains and others trained in this skilled care. In my presidency, I will work to increase training and research into making palliative care more accessible for all patients facing serious illness.

In addition, I will re-examine the limitations of the hospice benefit, which presents a tough choice about focusing on comfort only. What if you could have the dignity and support hospice brings without having to make one of the toughest decisions to forego potentially life-prolonging therapy?

And if we do those two things well, then we can really help the family caregivers who provide $470 billion worth of care. All of it unpaid. [Applause] We can give them back some of the dignity that illnesses like cancer and heart failure and Alzheimer’s rob from all of us.4

And as for the growing national debate on physician assisted suicide or as some call it aid-in-dying, states are grappling with this very issue, which highlights the importance of states rights to settle these difficult social questions.5 While I recognize there are surveys showing a majority of American’s support the ability to end their own life when facing a terminal illness, it is important to be cautious in opening new rights so we may protect those most vulnerable to abuse by those same rights.

While physician assisted dying laws are used by far less than 1% of people dying in states where it is legal, my job as president is to do the most good for the most people. That is why - to help 100% of people facing serious illness - I would want to fund more research and training into palliative care, re-examine the limitations on the hospice benefit, and figure out how we can better support family caregivers and patients so they have dignity throughout their illness and not just at the very end.

===END===

So there you go politicians. I tried to answer in a way that may fit your style and needs and still gets to the important issues. If you have a particular area you want to emphasize more with your base, I'm always available to talk to people about palliative care. Or I can direct you to many smart people who can do the same!

PS Politicians and advocates of palliative care also should support the Palliative Care and Hospice Education and Training Act (PCHETA) and check out the advocacy pages for the Center to Advance Palliative Care (CAPC) and the Hospice Action Network (HAN).

PPS More interesting background on Mr. Kinhan - "I'm not living with cancer, I'm walking with cancer." Concord Monitor video featuring Mr. Kinhan.

Christian Sinclair, MD, FAAHPM, is a palliative care doctor at the University of Kansas Medical Center, who was a committee member on the 2014 Institute of Medicine report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. He is also president-elect for the American Academy of Hospice and Palliative Medicine. He has no professional or private stance on physician assisted death. This piece is not representative of any of the above organizations and is his personal opinion.

1 - Let's make sure you are being human AND presidential. Empathize! And go for applause lines.
2 - Say it three times and make it stick!
3 - Callback to the original question. Show you're listening and this isn't a canned response.
4 - Everyone knows someone who has been an unpaid family caregiver. It's tough.
5 - Tried to do my best impression of a politician waffling here. 


Excerpt of CNN transcript: 
COOPER: I want you to meet Mr. Jim Kinhan (ph). He's a Democrat who says he is supporting you.

JIM KINHAN: Hello, Madam Secretary.

CLINTON: Thank you.

KINHAN: I'm very pleased to see you. This may come a little bit from right field, this may seem, but it's very personal to me and resonates probably with many other people who are elderly dealing with health issues. The question is coming to me as a person who is walking with colon cancer. And I'm walking with colon cancer with the word terminal very much in my vocabulary, comfortably and spiritually. But I wonder what leadership you could offer within an executive role that might help advance the respectful conversation that is needed around this personal choice that people may make, as we age and deal with health issues or be the caregivers of those people, to help enhance and -- their end of life with dignity.

CLINTON: Well, first of all, thank you for being here. Thank you so much for being part of this great New Hampshire primary process and thank you for support. And I really appreciate your asking the question. And I have to tell you, this is the first time I've been asked that question.

KINHAN: I -- I figured that.

CLINTON: Yes. I -- I really -- I really...

KINHAN: Maybe any candidate.

CLINTON: And I thank you for it, because we need to have a conversation in our country. There are states, as you know...

KINHAN: Yes.

CLINTON: -- that are moving to open up the opportunity without criminal liability for people to make this decision, in consultation by their families, even, in some cases, with medical professionals. But the issue is whether the medical professionals want to be involved or just be counselors. So it is a crucial issue that people deserve to understand from their own ethical, religious, faith-based perspective. So here's how I think about it. I want -- I want, as president, to try to catalyze that debate because I -- I believe you're right, this is going to become an issue more and more...

KINHAN: Exactly.

CLINTON: -- often. We are, on the good side, having many people live longer, but often, then, with very serious illnesses that they can be sustained on, but at some point, don't want to continue with the challenges that poses. So I don't have any easy or glib answer for you. I think I would want to really immerse myself in the -- the -- the ethical writings, the health writings, the scientific writings, the religious writings. I know some other countries, the Netherlands and others, have a quite open approach. I'd like to know what their experience has been. Because we -- we have to be sure that nobody is coerced, nobody is under duress. And that is a difficult line to draw. So I thank you -- I thank you so much for raising this really important absolutely critical question that we're all going to have to do some thinking about.

KINHAN: Thank you (INAUDIBLE).

Wednesday, February 3, 2016 by Christian Sinclair ·

Tuesday, February 2, 2016

End-of-Life Care around the World

by Ravindra Maharaj

A recent large study published in JAMA compared end-of-life practices for people with cancer in seven developed countries from 2010 to 2012: USA, Belgium, Canada, England, Germany, Norway and the Netherlands. The United States had the lowest proportion of in-hospital deaths and lowest number of days in the hospital in the last six months of life. Conversely, over 40% of patients who died from cancer were admitted to the intensive care unit (ICU) in the last 6 months of life (more than any other country in the study by a factor of two.) Something we have seen echoed in previous research.

Spending for end-of-life care in the hospital was high in the America but not as high as in Canada and Norway. It should be noted that in the figure shown that physician costs are not included in the US figure and therefore should be considered an underestimate.

Chemotherapy use was highest in Belgium followed by the US. The place of death seems to have shifted in the US away from the hospital as in the early 1980’s over 70% of patients with cancer died in the hospital and longer hospital stays were more common.

Besides all patients over 65 with any cancer, the researchers also looked at a targeted population of patients with lung cancer over age 65. The secondary analysis of this more similar group reinforced the patterns seen in the larger group with various cancer types.

Other commentary on this research can be found in the NY Times and Medscape. The article is not open access at this time.

Here are the topics:

T1: Are you surprised with the results of the study? If so, elaborate!
T2: How can the US centres reduce end of life hospitalisations and expense near end even further?
T3: What can other countries learn from the US practice? What can the US learn from the international community?
T4: Do you believe dying patients without cancer have similar outcomes?

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 2/3/2015 - 9p ET/ 6p PT
Host: Dr. Ravi Mahraj 

 for up to date info.

Ravindra P. Maharaj, MD is a palliative care physician and lecturer at the University of the West Indies. He is, more importantly, a proud new father of a rambunctious little boy.

Image Credit: JAMA via fair use (education, critique). All rights reserved otherwise

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

You can find past #hpm chat transcripts and analytics on Symplur.


Tuesday, February 2, 2016 by Pallimed Editor ·

Monday, February 1, 2016

How Assumptions about Dying Can Negatively Affect Patient Care

by Lizzy Miles

"The only true wisdom is in knowing you know nothing." – Socrates 

A little over a year ago I wrote a Pallimed article called, "We Don't Know Death: 7 Assumptions We Make about the Dying."  Having knowledge of our assumptions is a first step, but what do we do with that knowledge?  Since I wrote that article, I have further contemplated the “so what” factor of the assumptions to develop suggested interventions.

This is the first in a series of articles where I will take each assumption and explore the concept in greater depth to include implications and possible interventions.

Assumption: If you have experienced a death, you know how death happens.

There is a bit of irony here, but it seems to me that the people who have only experienced a few deaths have a greater confidence that they “know” death.  It is not their fault, they don’t know what they don’t know.  As staff members, we can also sometimes become overly confident in our ability to predict how a patient’s dying process will go. I am guilty of this, but I have been proven wrong enough times to now know that nothing is certain except the eventual death itself.

Patients, caregivers and professional staff all can get caught up in assumptions. We will explore all three scenarios and the implications.

Patients

It is not uncommon for hospice patients to have expectations about their hospice journey based upon what they have witnessed before.  The patient’s prior experiences can affect everything from pain control to emotional responses.

Suggested Intervention: Ask the patient, “What has been your prior experience with someone dying?”

A personal note written by family member of the author more than 50 years ago
For some patients, they will give you prolific details about all of their prior experiences.  I had one gentleman who spent over an hour recounting in great detail the cancer diagnoses, health decline, and eventual deaths of several siblings.  Though I would have preferred to complete my assessment about his life, I realized that these experiences were what shaped his world view.  He had an extensive distrust of the medical system, and he expected to be cut off in conversation.  He was pleasantly surprised when I let him elaborate in extensive detail. Was what he told me relevant?  I determined it was, because I came understand that he saw himself as a caregiver and it was difficult for him to be the one who now needed care.  I also learned that he had witnessed some symptom management issues (albeit 30 years ago) and he had fears that his pain would not be controlled.  I informed the RN case manager of the patient’s concerns.

I had another patient who saw his mother die right after she received morphine. He assumed it was the morphine that killed her and refused medication despite great pain.

Asking the question about prior deaths will also inform you of the patient’s prior encounters with hospice.  The patient’s expectations are going to be based on what happened before. Was the prior experience positive?  If so, what did they find most helpful?  If the prior experience was not helpful, what happened?  The way the patient talks about other exposures to hospice will reveal what is important to them.  For some patients, it’s the educational component of what is happening.  For others, it may be the emotional support they received.

A patient who shares a negative perception of a prior loved one’s death related to poor symptom management gives the staff an enormous advantage to get it right for them this time.

Suffering is not inevitable.

Caregivers

Suggested Intervention: Ask the caregiver about their prior death experiences and then, “Is it your hope or expectation to be present at time of death?”

Depending on the patient’s condition, I may or may not ask the question about time of death on admission.  The appropriateness for this question depends in part on the patient’s diagnosis. There are some patients who come on to hospice with less than a week to live. It would be prudent to ask this of the caregiver so that WE don’t make assumptions that they do want to be present (that’s a whole different article). What’s relevant here is that if a caregiver has been present during time of death previously, it is going to shape their expectation.  A caregiver who had a particularly meaningful bedside experience with the family gathered around may assume that this death will be the same.  They may or may not be right. Every death is different and the current patient may not want people around.
A different caregiver had told me he was present with a loved one previously and because of that experience he knew he did not want to be present at his father’s death.

Caregivers can also make assumptions about the length of time it takes to die based upon their prior experience with a different loved one.  If the previous death was prolonged then they might assume this one will be as well.

Suggested Intervention: Acknowledge the prior experience the caregiver had and inform them of potential variations.


Hospice and Palliative Care Staff

It can be very easy for hospice and palliative care staff to make assumptions about death. Assumptions are not entirely awful, they allow us to anticipate symptoms and education the patients and families regarding the potential course of an illness.

Suggested Intervention: Examine your own assumptions about the dying process.


There is a fine line between establishing an aura of competence and brazenly asserting that which we do not know.

Where we can get into trouble is if we state what we believe with such certainty that it does not allow for exceptions.  Well-meaning hospice workers may convey to family the trajectory of actively dying to include mottling, unconsciousness, apnea.  All of these symptoms do happen, but not always.  Additionally, patients can have these symptoms, be incorrectly labeled as “actively dying” and then go on to live for weeks.  Caregivers hang on to every word we say regarding prognosis. We need to be careful we are not setting false expectations for a longer or shorter life expectancy.  Yet we also do not want to be so vague as to frustrate the caregiver with insufficient information.

Suggested Intervention:  Consider using the words, “typically” and “may” when you talk about what “might” happen.

There is also a fine line with humility and creating a sense of doubt.

Be careful about expressing “unknowingness.” I had one situation where I was called to sit with a distressed family in a facility while a patient was actively dying. The family was hypervigilant about the dying patient’s symptoms.  They asked me a question about one of the symptoms and repeated to me that the hospice nurse said, “I’ve never seen that before!” Unfortunately, the family interpreted the nurse’s statement as something was “wrong” even though the patient did not seem to be in distress.

Suggestion intervention: When asked a question that you cannot answer, say “I’m not sure” and inform the patient/caregiver that you will collaborate with the hospice team.

Every death is unique.  In order to provide the best care possible for the patient and families, we need to be assessing their assumptions as well as our own.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW 

Note: To continue reading the assumption articles, the next one in the series is: Why We Can't Make Assumptions about Consciousness and Dying.

Monday, February 1, 2016 by Lizzy Miles ·

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