Pallimed: A Hospice and Palliative Medicine Blog

But I'm a pediatrician. I don't do "death."

2013-05-22T12:41:00.000-05:00

(A hearty welcome to Emily Riegel, MD (@emriegel) a Med/Peds physician who completed a hospice and palliative medicine fellowship a few years ago and is now at KU Medical Center helping lead pediatric palliative care in Kansas City. Emily is a keen observer who could easily be writing the great next medical drama on TV, but until then I'm happy she is contributing to Pallimed - Sinclair)

In the March issue of Pediatrics, Jonna D. Clark, MD, and Denise M. Dudzinski, PhD, take on the audacious task of encouraging pediatricians to step into the role of decision maker for terminally ill children and, in doing so, help alleviate the burden of making decisions regarding CPR from the shoulders of parents. In “The Culture of Dysthanasia: Attempting CPR in Terminally Ill Children,” Clark and Dudzinski call into question the practice of requiring the “opt-out” approach to CPR, and state that this “fails to appreciate the nuances of the special parent-child relationship and the moral and emotional complexity of enlisting parents in decisions to withhold CPR from their children.” The authors then provide two tenets on which physicians ought to base this action of taking over decision making for the parents of terminally ill children.

The first tenet is a brilliant description of the “therapeutic goal” of CPR, one that I would love to see come into more common use, to become as second nature in physicians minds’ as being able to state that “the therapeutic goal of antibiotics is to kill bacteria, or aid in the killing of bacteria.” The authors ask that physicians begin to look at the intervention of CPR in terms of its therapeutic goal being “not merely to resume spontaneous circulation but rather to provide circulation to vital organs to allow for the treatment of the underlying proximal and distal etiologies for the arrest.” This definition of the therapeutic goal of CPR was elucidated from the article by Bishop, et al, in their 2010 piece from the American Journal of Bioethics, which also asks physicians to rethink CPR’s utility based on its ability to address “the underlying disease process or…the distal causes of arrest.”

If we more readily viewed CPR in this light, would it become just as easy to say, “CPR will not fix the advanced, terminal cancer that has ultimately led, or will ultimately lead, to cardiac arrest, so we [the healthcare team] are not going to give you CPR since it is not a therapeutic option,” as it is to say to a patient (or his family), “Antibiotics will not address the viral cause of your upper respiratory infection, so I’m not going to give you antibiotics since it is not a therapeutic option.”

Perhaps it would.

If one looks at physician’s prescribing practices in terms of using antibiotics¹, often despite guidelines and recommendations and clinical evidence that they are not going to aid in reaching a “therapeutic goal,” it seems unlikely that when it comes to holding back on THE intervention, that physicians will actually be able to commit to making a much bigger decision for their patients.

The second tenet set forth by Clark and Dudzinski is that there are limited cases in which physicians ought to exert the decision making, and is only in cases where “all treating providers agree that attempting CPR is highly unlikely to achieve this therapeutic goal or will merely prolong dying.”

Let’s read that again, especially the part about “All treating providers agree…” Like adult patients facing a terminal illness, pediatric patients facing terminal illness often have a long list of treating providers. Just about any –ogist or –ivist may have some role on the treating team and could then be considered among the treating providers. The biggest challenge it seems is getting any group of physicians, who are highly educated and clearly very caring and committed providers, to agree on prognosis. Add in to that needing to agree on it publicly, perhaps in front of a patient or parent(s), and to remain consistent in it, along with the profound difficulties with prognostication itself in pediatric patients², and I propose that the situations in which the criteria to move forward with physician derived DNR orders are going to be rare.

While my critique is in no way directed at the work of Clark and Dudzinski, who do a lovely job of outlining their objective, using case examples, and pulling in bioethical principles, especially as they apply to the unique nature of the parent-child relationship, I do find myself feeling critical of us practicing physicians and wondering if we are really up to this task. Is it in the nature of pediatricians to take this on? When I lecture on pediatric palliative care for our fellowship lecture series, I point out that as much as kids are not just “little adults,” and that they require a vastly different approach to providing them with palliative care, so is the same for pediatricians. Being med-peds trained, and working in both adult and pediatric palliative care, as well as a pediatric hospitalist, I can tell you: pediatricians are different. Much different from internists. It’s a gentleness of heart and spirit, an eternal optimism toward the world, a bruised but never relinquished hope that we really can make a difference, one child at a time. It’s what gives these people the ability to be the doctors that they are: serving kids and their families, advocating for children, and very often, retaining a certain sense of wonder at the world. These same qualities, though, when it comes to tough conversations, giving bad news, breaking the hearts of parents, do not work well. You think it’s hard to tell a wife or an adult child that the 87 year old patient is not going to recover from his cancer and that he is going to die? Imagine looking a parent in the eye and saying those same words. I think that’s why many of my colleagues, even seasoned adult palliative care providers, have looked at me and said, “Uuuuugh. How can you do what you do?” And most pediatricians’ responses? Well, let’s just say I often feel like I should relocate to the Island of Misfit Toys.

With this in mind, I am even more appreciative of any calls to action of the type in this article. End of life decision making in pediatrics is wrought with legal, moral, ethical, personal and emotional entanglements that vary widely. Attempts at creating a standard of practice, or at least suggesting one when it comes to end of life decision making for children seem so reasonable and necessary. A shining example is the work of Dr. Sarah Friebert and Dr. Kaci Osenga in creating a trigger list for perinatal palliative care consultation.³ Having these trigger lists helps raise an awareness of the need for appropriate pediatric palliative care, much like the “Check Engine” light on the dashboard alerts one to the need to do just that. Without the proper tools to look at the engine and address the issue, though, that light does little to actually fix the problem. Evidence shows us that, just like I have minimal comfort with opening the hood of my car, so do pediatric residents, fellows, and attendings themselves have minimal comfort in handling these difficult patient care situations. A study by Orgel, et al, noted that 75% of pediatric residents, 60% of pediatric fellows, 40% of pediatric attendings (general and subspecialty) felt their knowledge and comfort level in delivering bas news was “less than sufficient.” ⁴

What would we say if 40% of mechanics told us they felt their knowledge level was “less than sufficient” when it comes to helping us with that pesky “Check Engine” light? Or, what if 40% of intensivists felt their knowledge level was “less than sufficient” to intubate a patient, or run their pressors, or place a central line?

Delivering bad news should be a basic skill that every physician has.⁵ If a physician can’t deliver bad news, how is that physician going to deliver the bad news AND make a decision regarding code status for a child? It doesn’t seem behaviorally congruent.

It is through articles that place a call to action, such as Clark and Dudzinksi’s, that practitioner’s are given the opportunity to reflect on their own practice, to see that there are guidelines and support structures for dealing with these gut wrenching situations, and develop a skill set for use when the need arises. We need to have the skill set so that in those complex, difficult moments of crisis, we can feel the comfort that comes with a plan. We can guide our team, our learners, and most importantly, guide and support our patients and their families.

Clark JD, and Dudzinski DM (2013). The culture of dysthanasia: attempting CPR in terminally ill children. Pediatrics, 131 (3), 572-80 PMID: 23382437 (Subscription Req'd)

¹Several studies in the past 20 years have found high rates of inappropriate antibiotic prescribing practices, with one finding that 50% of children seen by a physician for diagnosis of upper respiratory tract infection were prescribed antibiotics. David R. Nash, MD; Jeffrey Harman, PhD; Ellen R. Wald, MD; Kelly J. Kelleher, MD Arch Pediatr Adolesc Med. 2002;156(11):1114-1119 (Open Access)

² For those adult providers out there, imagine prognosticating without well validated or widely clinically tools, fully understood disease processes, and in physiologic organisms (children) that seem to have a resiliency beyond understanding. Drew posted a review of a prognostic tool for pediatric oncology patients. You adult providers, check out that prognostic tool and tell me it doesn’t make you cringe a bit.

³ Pediatric Palliative Care Referral Criteria available via CAPC.

⁴A Failing Medical Education Model. Faitan Orgel, Robert McCarter, and Shana Jacobs. Journal of Palliative Medicine. June 2010, 13(6): 677-683. doi:10.1089/jpm.2009.0338. (Subscription Req'd)

⁵ See also an article on the lack of training in end of life or palliative care issues reported by neonatology fellows. Boss RD, Hutton N, Donohue PK, Arnold RM. Neonatologist Training to Guide Family Decision Making for Critically Ill Infants. Arch Pediatr Adolesc Med. 2009;163(9):783-788. doi:10.1001/archpediatrics.2009.155. (Open Access)

Tweetchat Is Terminal! Dying Victim Of Twitter API Changes

2013-05-22T11:11:00.000-05:00

Twitter is changing how data can be accessed, which will more than likely lead to the demise of @tweetchat. :(
— TweetChat (@TweetChat) May 4, 2013

I am not talking about our Wednesday 9pm EST (8pm CST /6pm PST) HPM tweetchat. Our live palliative tweetchat conversations are alive and well since the inaugural tweetchat in June 2010. We would love to have you join us!

What is in a state of demise and is going away June 11 2013 is the web service www.tweetchat.com . This is a site that easily allows you to monitor one subject on Twitter organized around a hashtag.

I have been an avid user of the tweetchat services when looking for specific hashtags of topics that interest me like #HPM #geriatrics #MedEd (Medical Education) and #HCSM (Health Care Social Media). Tweetchat is simple to use and interact when participating in live twitter chats, quickly allowing to favorite messages, respond, retweet, access links, keeping count of the characters and even automatically adding the hashtag to your tweet.

Tweetchat allowed me to find my tribe of fellow palliative care professionals all over the country and the world. Further bonding occurred when we live tweet from a national conference like AAHPM. How great it is to meet fellow twitter #HPM people in real life after meeting first in tweetchat!

Ok anyways this post is not really about how great #hpm tweetchat is and how to use it, and the wonderful community. You can read that in our previous pallimed post here.

So I was using tweetchat during the American geriatrics society meeting #AGS13 on May 3 2013 when suddenly my beloved tweetchat was frozen with the following message:

In looking for answers to the problem the Tweetchat twitter account had the following information.

There are over a hundred healthcare tweetchats, and many more about just anything (wine, politics, church, etc.) so of course there were several concerned folks asking questions:

@twitter I am among the 100s of 1,000s of #twitter fans distressed by your decision re: #tweetchat @tweetchatplease let us in on why/what
— Wayne McEvilly (@waynemcevilly) May 6, 2013

While nothing replaces the website based simplicity of Tweetchat.com if you are thinking of participating in our Wednesday night weekly chats you can always try HootSuite and Tweetdeck (app based) and a newer site called oneQube has recently sprung up promising to fill the void.

Cases: Working Through Moral Distress

2013-05-22T07:16:00.000-05:00

Personal details in the case have been altered to protect patient privacy. These cases may reflect a composite image of many different cases to illustrate a teaching point.

Previously published on cases.pallimed.org

Case: Mrs. P was a 92 year old woman who was admitted to the acute care hospital from her nursing home with decreased mental status. She was found to have pneumonia, and though her infection improved with antibiotics, her mental status did not recover and she continued to be only slightly responsive to her family, unable to eat or interact. On the sixth day of hospitalization, palliative medicine was consulted to help the family with decision-making. By the time the palliative care consultant saw the patient, a temporary feeding tube had been placed, and the family had reached consensus on a trial of artificial feeding to give her a chance to regain strength, though they acknowledged that her prognosis was poor.

The next day, the patient was still unable to communicate, but was moaning and grimacing. She repeatedly tried to cough weakly to clear the copious secretions in her upper airway. The palliative care consultant recommended low doses of intravenous morphine to treat pain and shortness of breath, with a medication to clear secretions. However, Mrs. P’s attending physician was concerned that treating pain with opioids would cause respiratory depression and lead to Mrs. P’s death. The next night, the bedside nurse charted several times that Mrs. P was screaming, but they were only able to give her Tylenol for pain; she required wrist restraints to prevent her from pulling out her feeding tube. The palliative care physician was haunted by the image of the dying 92 year old woman, tied down and denied treatment for her suffering.

Discussion: Moral distress occurs when the clinician knows the appropriate action to take, but is unable to carry it out, and feels forced to give care contrary to her values. It is more often described in the nursing literature, but is beginning to come to the awareness of physicians as well. Moral distress often occurs in end-of-life situations when the decision is made to provide aggressive life-sustaining treatments that are felt to put excessive burden on patients and families.

Clinicians who see patients at the end of life may be particularly vulnerable to moral distress. For those of us who serve as consultants, our involvement in a case is at the discretion of the attending physician. In cases such as Mrs. P’s, we feel constrained by our role as advisors to the consulting physicians and the expectation of professional courtesy towards other physicians’ decisions. When we serve as attending physicians ourselves, our ability to relieve patient suffering may be limited by the family’s preference that every possible life-sustaining measure be taken.

Moral distress is also a common problem in the nursing field, particularly critical care nursing. For clinicians in any of these roles, moral distress arises when the system or other people interfere with our ability to relieve a dying patient’s suffering. In the nursing literature, moral distress has been shown to contribute to decreased job satisfaction and to burnout. The American Academy of Critical Care Nurses recommends addressing moral distress with a four-step process:

Ask: You may not even be aware that you are suffering from moral distress. Signs of moral distress may include physical illnesses, poor sleep, and fatigue; addictive behaviors; disconnection with family or community; and either over-involvement or disengagement from patients and families.
Affirm: Validate the distress by discussing these feelings and perceptions with others. Make a commitment to caring for yourself by addressing moral distress.
Assess: Identify sources of your distress, and rate its severity. Determine your readiness to act, and what impact your action would have on professional relationships, patients, and families.
Act: Identify appropriate sources of support, reduce the risks of taking action when possible, and maximize your strengths. Then you may decide to act to address a specific source of distress in your work environment.

In Mrs. P’s case, the consultant discussed the case with the interdisciplinary team, receiving support for her concerns. Despite fear of negative repercussions from the primary service, she called the patient’s son herself and gently explained the signs of suffering that Mrs. P was showing. He agreed that his mother should have low-dose morphine. The primary team added this order without any expressed objections to the consultant stepping over her boundaries. Mrs. P died a few days later.

References
1. Weissman, D. Moral distress in palliative care. Journal of Palliative Medicine. October 2009, 12(10): 865-866. (Sub Req'd)

2. Gallagher, A., (March 21, 2010) "Moral Distress and Moral Courage in Everyday Nursing Practice" OJIN: The Online Journal of Issues in Nursing Vol. 16 No. 2. (Open Access)

3.Meltzer LS, Huckabay LM. Critical Care Nurses' Perceptions of Futile Care and Its Effect on Burnout. Am J Crit Care May 2004 13:202-208(Open Access)

4. The American Association of Critical Care Nurses. The 4 A’s for managing moral distress. (Open Access)

Additional Resources:
"Moral Distress in Palliative Care Teams" presentation by Dr. David Weissman
Medical Futility Remains Leading Cause of Moral Distress among Nurses via Medical Futility Blog

Original Case by Julie Childers, MD, Edited by Christian Sinclair, MD

Originally posted at the Institute to Enhance Palliative Care,

University of Pittsburgh Medical Center

Pallimed Case Conference Disclaimer: This post is not intended to substitute good individualized clinical judgement or replace a physician-patient relationship. It is published as a means to illustrate important teaching points in health care.

The Fault In Our Stars (TFIOS): An Insightful Depiction Of Teens Living With Serious Illness

2013-05-08T08:00:00.000-05:00

I have to confess that even though I am a grown woman I seem to like many young adult–teenage books (I am still seventeen at heart). I am frequently asking my daughter and nieces about books they enjoyed when I’m looking for something to read. So far the books I have read include some teenage love stories happening in a futuristic dystopia in which the main characters are at risk of dying because of being in a arena fighting other children like in the hunger games; or being at risk of getting injured while performing difficult stunts like jumping from a train like in the divergent series.

The Fault in Our Stars () by John Green is also about teens who fall in love and who are actually dying because they both have cancer. The book is narrated from the perspective of Hazel Lancaster a teenage girl with stage IV thyroid cancer metastatic to the lungs. Hazel uses a nasal cannula connected to an oxygen tank because her “lungs suck at being lungs”.

At the insistence of her parents she reluctantly attends a youth Cancer Support Group. “Support Group featured a rotating cast of characters in various states of tumor-driven unwellness. Why did the cast rotate? A side effect of dying.”

However things drastically change when a gorgeous boy named Augustus “Gus” Waters suddenly appears at support group. Augustus Waters is seventeen, he has osteosarcoma and had part of a leg amputated. Gus and Hazel connect and the romance slowly blossoms.

The book portrays the relationships of Hazel and Gus with each other, with their parents/family, healthcare professionals, healthy kids, and other “cancer kids” while they live their limited life the best they can. It is clear how serious illness affects the already difficult teenage years.

Below are some “palliative” and quality of life (love) related quotes from the book:

“There are a number of ways to establish someone's survival expectation without actually asking. I used the classic "so are you in school?” Generally parents pull you out of school at some point if they expect you to bite in. “

“Cancer perks are the little things cancer kids get that regular kids don’t” Hazel

“Depression is a side effect of dying.” Hazel

“That's the thing about pain...it demands to be felt.” Hazel

“I already told you my story. I was diagnosed when-“ “No, not your cancer story. Your story. Interests , hobbies, passions, weird fetiches, etcetera”

“As he read, I fell in love the way you fall asleep: slowly, and then all at once,” Hazel

Okay

“Oh, I wouldn't mind, Hazel Grace. It would be a privilege to have my heart broken by you.” Gus

I'm in love with you, and I'm not in the business of denying myself the simple pleasure of saying true things.

“Maybe 'okay' will be our 'always”

“You gave me a forever within the numbered days, and I’m grateful.”- Hazel

“That’s part of what I like about the book in some ways. It portrays death truthfully. You die in the middle of your life, in the middle of a sentence”

The Fault in Our Stars is a beautiful story about love and life. I would like to tell you more but I am afraid I would just spoil it for you. Get it and read it for yourself! you will laugh, smile, cry... feel. You won’t be disappointed.

Ok so now I’m a fan of John Green and he calls his fans “nerd fighters”. I really loved TFIOS and I wanted to keep getting more!

So here are other things you can do (save some for after reading the book):

You can follow John Green on twitter @realjohngreen
You can follow John Green on youtube and watch some quirky videos
Listen to the The Fault In Our Stars Music Video inspired by TFIOS book by Troye Sivan.

4. Read the lyrics of the song in #3 they are just inspiring.
5. You can re-read TFIOS wonderful quotes here. (spoiler alert )
6. Read the Q & A with John Green about TFIOS (spoiler alert)
7. Gather some friends and have a book club. (spoiler alert)
8. Learn about Esther Earl, to whom TFIOS is dedicated. Esther was a teenager who had Thyroid cancer and developed an online community of friends by video blogging. Esther was a nerdfighter who died of cancer in August of 2010. She and John Green were friends. Watch Esther's YouTube videos here and learn about the organization her family set up in her memory.

Below is a video of John Green with Esther

John Green Announces Esther's death

References

1. The fault in our stars good reads review. (Accessed May 8, 2013, at http://www.goodreads.com/book/show/11870085-the-fault-in-our-stars.)

2. I fell in love the way you fall asleep. drawing. (Accessed May 8, 2013, at http://incredibru.deviantart.com/art/I-fell-in-love-the-way-you-fall-asleep-361844486?q=gallery%3Aincredibru%2F32037977&qo=8.)

3. Okay. Drawing. (Accessed May 8, 2013, at http://browse.deviantart.com/art/Okay-315659134 )

@rossjeanette

What to do after the patient is made comfort measures only (CMO)

2013-05-08T07:44:00.000-05:00

Personal details in the case have been altered to protect patient privacy. These cases may reflect a composite image of many different cases to illustrate a teaching point.

Previously published on cases.pallimed.org

Case: The patient is a 77-year-old man who presented with a severe headache and syncopal episode. His past medical history is remarkable for diabetes, hypertension, hyperlipidemia and an MI in 2 years ago. His family brought him to his local emergency room where it was noted that he had a blown left pupil, and CT scan revealed a large subarachnoid bleed. He was intubated and life flighted to the hospital. There he was seen by neurology and neurosurgery, and it was determined that he was not a surgical candidate. Over the next three days he had little neurological improvement, and after meeting with the family it was decided that he should be made comfort measures only. He was extubated and 24 hours had stable vital signs, although he was still comatose. The neurology and neurosurgery team are unclear about what should happen next or about the topics that need to be discussed with the family.

Discussion: Deciding to focus only on comfort is a major transition point for patients, families and health care providers. After making this decision, most families are not sure what comes next. They look to health care providers to reassure them that they are doing the right thing and to ensure that their loved one does not suffer and that they are prepared for the next few days. The following questions should guide one’s action after a patient is made CMO:

1. Are the patient’s symptoms adequately treated/prevented?

A standardized comfort measures only order sheet can optimize symptom management in CMO patients. It reminds clinicians that:

a. All medications and laboratory tests that do not promote comfort should be discontinued.

b. Most patients near the end of life are not awake enough to tell people when they have symptoms. Instead, clinicians should treat nonverbal signs such as rapid respiratory rate (24/minute), grimacing, moaning, and restlessness presumptively as signs of discomfort or shortness of breath.

c. The appropriate medications to treat pain or shortness of breath are opiates. To promote rapid control of symptoms, PRN* opiates can be titrated rapidly (every 15-30 minutes for iv dosage and 60 minutes for oral opiates.) An infusion may be started if the patient has active symptoms requiring several boluses.

d. Terminal delirium is treated using haloperidol or benzodiazepines, although benzodiazpeines (i.e. lorazepam) may cause paradoxical worsening of symptoms

e. For treatment of secretions, or “the death rattle,” consider gentle repositioning or anticholinergic medications such as glycopyrrolate, although the evidence base for pharmacological treatment is weak.

2. Does the family want information about what they are likely to see as their loved one dies?

Most families do not have a great deal of experience with death and dying. It is appropriate to ask them if they would like to hear what they are likely to see over the next hours/days. This information may decrease their fear of the unknown and reassure them that their loved one is “on the right trajectory” and not suffering. For example, one can tell families that as patients die it is normal that:

a. They are less responsive and sleep most of the time. Hearing may persist, however, and thus families should feel free to talk to their loved one.

b. They eat and drink less. This is not uncomfortable and good mouth care relieves any thirst the patient may have.

c. Their urine output will decrease, and their hands and feet may become cool.

d. Their breathing may become irregular with periods of apnea.

e. They may begin to “gurgle.” This is not uncomfortable to the patient but can be distressing to families who are worried that their loved one is “drowning.” Drawing an analogy to snoring may be helpful.

Finally, families often want to know how long their loved ones will live. This is an extraordinarily difficult question because of our limited ability to prognosticate the exact time of death. Our ability to predict the time of death is no better than our ability to predict the time of birth–we can set boundaries but not determine exact times. Acknowledge your uncertainty, and then give your best judgment–whether hours to days or days to a week or two. Asking the family if they have any specific concerns is often helpful.

3. Does the patient or family have religious traditions that the health care team should be aware of?

Ask the family whether there are any spiritual or religious traditions that are important to them or their loved one. The chaplaincy service at many hospitals is available 24/7 to meet with families and provide support.

4. Is there anyone else who needs to come and say goodbye?

It is useful to ask families whether there is anyone else who would like to say goodbye to their loved one. In addition, families are often unsure what or how much to tell children about their loved one’s dying or whether to let them see them. Asking about this issue allows the family to express their discomfort and ask questions. This is a complicated topic about which social workers often have particular expertise.

5. What dispositional issues should be discussed with the family?

There are three general options for patients who have been made CMO:
a. The family may wish to stay in the hospital, either with or without hospice. Given that roughly 70% of patients die within 24 hours of having life sustaining treatments stopped in the ICU, this is a reasonable option for the first day. Staying in the hospital for longer periods may not be the best option as the staff have competing responsibilities, hospitals are not set up to focus solely on comfort, and many hospitals have a 2-3 day time limit for in-hospital hospice.
b. For patients who have symptoms and are actively dying, the most appropriate location may be an inpatient hospice unit (either a stand alone unit or located in a long term care facility). These units are staffed by hospice nurses, social workers, and physicians and provide excellent palliative care as well as attention to families’ psychosocial and religious needs.
c. Taking the patient home with hospice may also be a good option for families, provided they have enough support and are willing to have their loved one at home. It is important to remember that when a patient is at home, hospices provide roughly 2-4 hours of care a day depending on the patient’s needs. Thus, the family needs to understand and be willing to provide basic comfort care for their loved one (with direction and guidance from the hospice).

Which options are available and will fit the patient/family needs will vary depending on the patient’s clinical status, the insurance, and family situation. Care managers and social workers in most units are knowledgeable about these issues and can help guide the family about the appropriate choice given their values. Given this, it is important to have them meet with the family shortly after the patient is made CMO. In difficult or complex cases, the palliative care social workers are available for consultation and help.

*PRN = as needed

Original Case by Robert Arnold, MD, Edited by Christian Sinclair, MD

Originally posted at the Institute to Enhance Palliative Care,

University of Pittsburgh Medical Center

Relief From Death Anxiety: In Your Medicine Cabinet Already?

2013-05-05T21:00:00.000-05:00

The radio show Wait, Wait....Don't Tell Me! has a weekly segment called "Bluff the Listener" during which a caller listens to three unbelievable stories and then guess which one of the three is actually true. Much to my surprise, this week's "true" (yet unbelievable) story is about evidence that acetaminophen might relieve existential angst. (Here's a direct link to the audio segment.)


Julius Axelrod (Source: National Institutes of Health)

Really? Good ole' Tylenol might relieve bothersome thoughts about the ultimate threat to our existence? How could I not investigate this further, if only because the report threatens any conception I have of this meek anti-pyretic/analgesic. The title of the study from Psychological Science piqued my intrigue: "The Common Pain of Surrealism and Death: Acetaminophen Reduces Compensatory Affirmation Following Meaning Threat."

The journal article describes two separate studies, but has a background section with some familiar sounding concepts to palliative care clinicians and others which are likely foreign. The authors describe evidence which suggests both physical and social pain may activate the dorsal anterior cingulate cortex (dACC). This area of the brain may serve as a "cortical alarm system" which is sensitive to any discrepancy in the environment (such as a new severe pain stimulus or perceived social slight). The dACC has thus "been theorized to be the source of the unpleasant arousal associated with uncertainty and violations of expectations." Indeed, the authors cite evidence suggesting acetaminophen may reduce activation of the dACC.

What about fear of death? We'll get there, but first, the "Meaning Maintenance Model" which is useful for understanding the study:

""The Meaning Maintenance Model" focuses on people’s compensatory responses to violations of expectations, termed meaning threats. The model posits that any perceived meaning threat produces unpleasant arousal that often lies outside of awareness, and is nonspecific to the causal stimulus. This arousal arguably serves to prompt people to identify the source of the perceived discrepancy and, if time and cognitive resources are sufficiently available, to accommodate to the unexpected event....In many cases, however, it is not possible to resolve the violation, either because the problem is too complex or because the source of the arousal has not been identified correctly. When this occurs, people may respond to the arousal by affirming any available unrelated schema to which they are committed. These affirmations of intact meaning frameworks serve to dispel the unpleasant sense that something is wrong."

In other words, if there's a violation to meaning which is challenging to resolve (e.g. thinking about one's own death), a person might compensate by using cognitive resources to resolve an unrelated but easier to resolve challenge. At the heart of the hypothesis, the presence of a violation of meaning may influence how the person resolves the easier challenge. The person may overcompensate in resolving the "easier" challenge if already presented with a violation to meaning that cannot be readily resolved. How did the researchers test this hypothesis?

In one of the double-blind, randomized controlled studies, the participants received either Acetaminophen 1000 mg or a placebo pill orally. After completing some filler tasks to allow time for the drug to reach peak effect, all participants were randomized to complete an essay on one of two topics: 1. What will happen to their body after they die and how they feel about it or 2. The experience of dental pain. Dental pain was chosen because it's an aversive event but likely doesn't create an experience of "violated expectations" like imagining death might.

Subsequently, subjects read about a hypothetical arrest of a person accused of prostitution and were asked to set a bail amount (a "social judgment survey"), an arbitrary task for most of us but one which isn't too challenging to think about.

The researchers found that of all the participants, the group which was asked to write about their own death after taking a placebo pill set the highest bail. The difference between this group and the other groups was statistically significant whereas the difference between the other groups (including the death-writing/Tylenol-taking group) was not significant. In other words, the death-writing/placebo-taking group "compensated" by punishing the accused person more harshly yet this effect appeared to be mitigated by acetaminophen.

Self-reported positive and negative affect did not differ between any of the study conditions, suggesting to the researchers that compensation/"meaning maintenance" is largely not a conscious process.

Included in the paper is another study using similar methods to test the same hypothesis but with different conditions. They found similar results. The authors point out that while Acetaminophen acts at the dACC, it also acts elsewhere, so no conclusion can be made about the neurophysiological basis of any effect.

So, after being asked to reflect on death, participants in this study (who were students at the University of British Columbia where the studies were conducted) inflicted a harsher penalty than normal, perhaps to compensate subconsciously for their inability to resolve the "violation" of thinking about their own death. Should your electronic medical record system now add "existential angst" as an indication for Tylenol? Keep prescribing it for mild pain and fever, but there's nothing in this study which suggests added value of Tylenol for a patient facing a serious, potentially life-threatening illness. There's probably more relevance to defense attorneys who might consider asking potential jurors during voir dire if they have recently been diagnosed with a life-threatening illness (I suspect that's a stretch, too).

What is the relevance of this study, then, to you, the curious Pallimed reader?

Cicely Saunders' concept of total pain and Eric Cassell's deconstruction of suffering are frequently cited in palliative care literature. Both suggest a common pathway by which changes in a person's physical, social, psychological, and spiritual states might inflict the person. I cannot remember coming across a proposed neurophysiological explanation of the phenomena- if one exists, I'd love to see it. The theoretical "meaning maintenance model" described in the article seems to resonate well with total pain/suffering as well as our attempt to intervene through palliation.

If the "meaning maintenance model" is real, what adaptive and maladaptive ways do people use in a subconscious attempt to compensate? For instance, people cannot control the fact that they will die, but can exert some control over decisions about their healthcare. What subconscious processes are at play as patients and their physicians navigate these decisions?

What palliative care interventions provide an avenue for people to compensate when faced with the "unpleasant violation of expectation" which can be associated with the imminent threat of death? Of many possibilities, dignity therapy comes immediately to mind as a therapy which fits the model of "affirming an intact meaning framework" in a constructive manner. What are the neurophysiological effects of dignity therapy?

In the context of this study, it's also interesting to reflect on the variation amongst people with respect to death anxiety. Might this be explainable by differences in neurophysiology? For instance, when faced with death, might a region of the brain (such as the dACC) become less activated in some people than others? What affect could age have on the response of this region of the brain (e.g. does it become less responsive as we grow older, on average). What about over the course of a chronic disease?

What about spiritual practices? Might mindfulness or reflecting on a religious verse about death influence the reactiveness of the dACC? In a very brief search, I did find a few references to the dACC being thicker on average in those who meditate, and a growing body of evidence suggests the value of mindfulness for various physical and psychological symptoms. (My hypothesis: Look at the mirror on your medicine cabinet rather than inside the cabinet for a possible source of relief for death anxiety.)

Lots of questions. Maybe, unbeknownst to me, some answers exist, though I suspect future career(s) could be formed around some of them at the intersection of neurophysiology, psychology, and medicine .

@lfettig

Lung Cancer Guidelines With No Mention of Palliative Care?

2013-05-02T10:21:00.000-05:00

(Ed. - Welcome Mr. John Hennessy to the Pallimed family. His background in executive leadership of oncology programs brings a potential outsiders perspective to Pallimed. Thankfully he is a strong ally and champion for hospice and palliative care as you will see from his first post. Great to have you here John. - Christian)

Disappointed…frustrated…we’ve all been there. My most vivid memories are of birthdays at home, when books and socks were unwrapped rather than remote control model airplanes and car keys. It wasn’t my birthday this week, but my daily e-mails usually include a gift or two. This week, it came from the National Comprehensive Cancer Network (NCCN) in the form of a link to the 2013 NCCN Guidelines for Patients for Non-Small Cell Lung Cancer (NSCLC). At the time of this writing, it appears to be one of the most recently-updated guide books available.

If you haven’t seen the guidelines on the NCCN website, they are pretty amazing. They look sharp— the graphics are top notch. The NSCLC guide is exactly 100 pages, and is nothing, if not thorough. Diagrams of the lungs and lymph nodes are excellent and informative. The guide covers diagnosis and testing, staging and a broad spectrum of treatment options.

I’ll admit that, initially, I didn’t read it word for word, cover to cover—but I was certainly scanning for key concepts. In particular, I was looking for how the guide would integrate the wonderful work written in 2010 by Jennifer Temel, M.D. and her team at Massachusetts General Hospital on the integration of early palliative care in metastatic lung cancer. (Pallimed posts here and here) Now, more than ever, these findings are extremely helpful and informative in patient education. So, I kept looking…and looking.

There were a couple of references to “best supportive care,” but if that phrase is euphemistic jargon in our industry, I wonder how that is interpreted by patients who are working their way through the 100-page guide.

After my second and more thorough read through, I was convinced I hadn’t seen the word “palliative” anywhere. The good news was that I could access an easy search feature, which I thought would confirm that I had not been a careful reader. However, the bad news was that the search engine said, “There are no results.”

Disappointed…frustrated…

If you didn’t see it the first time, Dr. Temel’s article was a little like a birthday gift…or maybe a birthday gift that showed up a week late. Atul Gawande’s “Letting Go” had just been published in the New Yorker and had provided a glimpse into the world of palliative care, but it was only an anecdotal view. And merely moments later, (well, medical literature moments), the New England Journal of Medicine publishes Temel’s peer-reviewed article that reveals early palliative care in non-small cell lung cancer extends and enhances life. Neither of these articles were a surprise to those of us who advocate for and practice palliative care, but these were wonderful, high-profile stories in the wake of “death panel” rhetoric.

Fast forward to 2013…one must applaud NCCN for migrating from provider-centric roadmaps and reaching out to patients to help them understand a complex disease process. However, it is hard to understand how a treatment modality that has been shown to make life better and longer for patients with NSCLC, goes virtually unmentioned. It would seem that if early intervention has a survival advantage, we should start seeing a discussion of palliative care in the early sections of this guidebook. Educating patients about palliative care, as a complement to other therapies, would encourage conversations that can otherwise be difficult for practitioners to start.

So, I’m planning on creating a little gift of my own, and am sending these thoughts to a colleague at NCCN. I’m not sure how NCCN develops and promulgates its guidelines, but I know if I don’t say anything, I’m not helping. I have to believe that in an upcoming version of the guide, chapter six will include a section for palliative care.

Temel, J., Greer, J., Muzikansky, A., Gallagher, E., Admane, S., Jackson, V., Dahlin, C., Blinderman, C., Jacobsen, J., Pirl, W., Billings, J., & Lynch, T. (2010). Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer New England Journal of Medicine, 363 (8), 733-742 DOI: 10.1056/NEJMoa1000678 - Open Acess PDF

John Hennessy is Vice President, Operations for Sarah Cannon, the global cancer enterprise of Hospital Corporation of America (HCA). His focus areas at Sarah Cannon are medical oncology, survivorship, and palliative care. He serves on the Board of Trustees of the Association of Community Cancer Centers (ACCC), and on several committees for the American Society for Clinical Oncology (ASCO), including the Clinical Practice Committee.

Photo Credit: Gifted by JD Hancock

Transdermal Granisetron for Refractory Nausea and Vomiting

2013-05-01T15:30:00.000-05:00

Personal details in the case have been altered to protect patient privacy. These cases may reflect a composite image of many different cases to illustrate a teaching point.

Previously published on cases.pallimed.org

Case:

Ms Emma N. is a 32 year old woman with type 1 diabetes who underwent a living related donor renal transplant and a subsequent pancreas transplant. Unfortunately, both transplants were complicated by rejection and graft failure requiring re-initiation of hemodialysis in 3 years ago. Since that time she has suffered with constant, intractable nausea with multiple episodes of vomiting throughout each day. Her symptoms were initially thought related to diabetic gastroparesis but they did not respond to metoclopramide, erythromycin or pylorus muscle botulinum toxin injections. An electrical gastric stimulator was to be placed but was aborted when a gastric emptying study was normal. Extensive workup, including laboratory studies, endoscopy, CNS imaging and abdominal imaging, was unrevealing. She received little or no benefit from adequate trials of domperidone, prochlorperazine, ondansetron, oral granisetron, promethazine, trimethobenzamide, scopolamine, mirtazapine, dronabinol, pancreatic enzymes and a proton pump inhibitor.

She underwent voluntary admission to a psychiatric hospital for treatment of any possible contributing eating disorder without any improvement. She has had more than 40 admissions to the hospital for nausea and vomiting. A feeding J-tube was placed to maintain adequate nutrition in 2 years ago. She presented to the Palliative Care clinic for further management of her nausea and vomiting. After a complete history and physical, the etiology of her symptoms remained somewhat elusive. She had nausea before her transplant and it had resolved when the kidney was working then recurred when it failed so the final conclusion was that her symptoms may be due to a poorly defined metabolic process related to her renal failure. Olanzapine was initiated on the first visit for refractory nausea and vomiting and the patient was referred to psychology and psychiatry to help with coping and to address underlying depression and anxiety. At the subsequent visit she noted some benefit so the olanzapine dose was increased and a granisetron transdermal patch was added. At the next visit her symptoms had improved dramatically with a clear temporal relation to starting the granisetron patch. She was only vomiting once or twice in the morning and was relatively asymptomatic through the day. In her first clinic visit she had vomited multiple times through the visit and appeared miserable.

At this visit she was asymptomatic, neatly dressed, wearing makeup and was thrilled at this new level of symptom control which was allowing her to re-engage her life.

Discussion: There were many factors that likely contributed to the dramatic improvement in Ms Emma N’s refractory nausea and vomiting. Better psychiatric care through the palliative care psychologist and psychiatrist almost certainly played a role in her overall clinical turn-around. The close attention, serial visits and supportive counseling she received in the Palliative Care clinic could also have been therapeutic. Up-titration of her olanzapine also likely was helpful. Olanzapine is an atypical antipsychotic that works on multiple receptors including dopaminergic, serotonergic, adrenergic, histaminergic and muscarinic receptors. Of particular interest is its antagonism of 5HT2 receptors which are located in the vomiting center and are not well targeted by other traditional antiemetics. Multiple small trials have demonstrated efficacy of olanzapine for chemotherapy-induced nausea and vomiting.¹ Many palliative care practitioners are now also starting to use olanzapine for refractory nausea and vomiting in patients with advanced cancer and other life-limiting conditions.^2-4

Even with all of these possible contributors to her improvement, there still seemed to be a clear benefit that came with initiation of the granisetron patch. While intravenous and oral granisetron have been available for some time, transdermal granisetron (Sancuso© - prescribing insert) is a relatively new addition to the practitioner’s toolbox for difficult to control nausea and vomiting. Transdermal granisetron was approved by the FDA for chemotherapy-induced nausea and vomiting (CINV) in September of 2008 based largely on a trial of 582 patients receiving multi-day moderately or highly emetogenic chemotherapy. Patients received either oral or transdermal granisetron and achieved equally good control of their symptoms with either method (approximately 60% in each group achieving complete symptom control). The most common side effect in both groups was constipation.⁵ The patch is an 8x6cm clear, plastic-backed patch and is worn for 7 days. Pharmacokinectic studies suggest that the patch delivers a dose equivalent to 2 mg of oral granisetron each day it is worn.⁶

It is thought to exert its antiemetic effect through antagonism of 5HT3 receptors in the gut and chemoreceptor trigger zone.⁷ Experience with the patch outside of CINV, however, is limited. This case suggests that transdermal granisetron may have a role in other cases of refractory nausea and vomiting. It is unclear why the transdermal form of the drug worked so much better than the oral version in this case. It could reflect absorption issues, especially if she was unable to keep the pills down. It could also reflect compliance issues and may bring into question the adequacy of her prior trial of oral granisetron. Whatever the mechanism, however, the result was dramatic. Further study of this agent in settings other than CINV is clearly needed. Hopefully these results can be replicated and other patients with difficult-to-control nausea and vomiting can achieve life-changing results similar to those achieved by this case.

References:
1. Navari RM, Einhorn LH, Loehrer PJ Sr, Passik SD, Vinson J, McClean J, Chowhan N, Hanna NH; Johnson CS (2007). A phase II trial of olanzapine, dexamethasone, and palonosetron for the prevention of chemotherapy-induced nausea and vomiting: a Hoosier oncology group study. Supportive Care in Cancer, 15 (11), 1285-91 PMID: 17375339

2. Srivastava M, Brito-Dellan N, Davis MP, Leach M, Lagman R (2003). Olanzapine as an antiemetic in refractory nausea and vomiting in advanced cancer. Journal of Pain and Symptom Management, 25 (6), 578-82 PMID: 12782438

3. Jackson WC, Tavernier L (2003). Olanzapine for intractable nausea in palliative care patients. Journal of Palliative Medicine, 6 (2), 251-5 PMID: 12854942

4. Passik SD, Lundberg J, Kirsh KL, Theobald D, Donaghy K, Holtsclaw E, Cooper M, Dugan W (2002). A pilot exploration of the antiemetic activity of olanzapine for the relief of nausea in patients with advanced cancer and pain. Journal of Pain and Symptom Management, 23 (6), 526-32 PMID: 12067777

5. Boccia RV, Gordan LN, Clark G, Howell JD, Grunberg SM, on behalf of the Sancuso Study Group (2010). Efficacy and tolerability of transdermal granisetron for the control of chemotherapy-induced nausea and vomiting associated with moderately and highly emetogenic multi-day chemotherapy: a randomized, double-blind, phase III study. Supportive Care in Cancer PMID: 20835873 - Open Access PDF

6. Howell J, Smeets J, Drenth HJ, Gill D (2009). Pharmacokinetics of a granisetron transdermal system for the treatment of chemotherapy-induced nausea and vomiting. Journal of Oncology Pharmacy Practice, 15 (4), 223-31 PMID: 19304880

7. Wood, G., Shega, J., Lynch, B., Von Roenn, J. (2007). Management of Intractable Nausea and Vomiting in Patients at the End of Life: "I Was Feeling Nauseous All of the Time . . . Nothing Was Working" JAMA: The Journal of the American Medical Association, 298 (10), 1196-1207 DOI: 10.1001/jama.298.10.1196

Original Case by Gordon J Wood, MD, Edited by Christian Sinclair, MD

Originally posted at the Institute to Enhance Palliative Care,
University of Pittsburgh Medical Center
Original PDF

Pallimed Case Conference Disclaimer: This post is not intended to substitue good individualized clinical judgement or replace a physician-patient relationship. It is published as a means to illustrate important teaching points in health care.

Pallimed Case Conferences is Moving (Here)

2013-05-01T11:25:00.000-05:00

Editorial decisions and challenges in upkeep will mean Pallimed: Case Conferences will be moving over the next year to the main Pallimed website (www.pallimed.org). The first case is already (re-)published: Transdermal Granisetron for Refractory Nausea and Vomiting

When the Case Conference blog was first started in 2008, there was always hope to find an editor to oversee it, but early collaborations ultimately did not facilitate stable editorial leadership.

The aim to use cases to illustrate important teaching points in palliative care is still an important one. The University of Pittsburgh Palliative Care Department has graciously allowed us to continue to be a publishing venue for their excellent teaching cases. We are hopeful to see more open access case based publications from fellowships, palliative care departments and hospice organizations. Pallimed is committed to being a quality forum for these cases going forward.

So for ease of publication and the importance of delivering good content on a consistent basis we will be importing the already published cases to the main Pallimed site over the next year. In addition to these historical cases we will be looking for new cases and encourage submissions for potential publication on Pallimed. All cases will be double de-identified (once by the author and once by the Pallimed editorial staff) for protection of the involved parties.

The move will also give us an opportunity to start re-labeling some of these posts based on symptoms, clinical setting and other various organizing principles. We will be working on importing the comments that have already been made on the historical cases since the comment threads on cases.pallimed.org are now closed. There may be some technical hiccups as we get the comments and posts synced up so please bear with us. All Case Conference posts will be labeled with a dark blue P and the Pallimed Case Conferences logos. New and re-published posts will be clearly identified so you do not read back through the same content (if you do not want to). All cases will have references and the availability of open access PDFs will be prioritized and highlighted.

Current Email Subscribers: All current email subscribers to Cases will be imported to the main Pallimed list. I will work at removing any duplicate subscribers, plus the email updates have a very simple unsubscribe option. If you are only interested in Case Conferences we eventually will be moving to a new subscription system in the May 2013 which will allow for you to just choose Cases if those interest you most.

Comments: Comments on cases.pallimed.org are now closed We will sync your comments over to the new post in addition to posting a follow-back link.

Pallimed Case Conferences (cases.pallimed.org) will stay online as an archived source, but will no longer be updated. For new cases please search www.pallimed.org

If you are interested in submitting a Case or even potentially becoming a Section Editor for Case Conferences please email christian@pallimed.org

Raising Palliative Care Awareness Through Film Screeenings

2013-05-01T08:51:00.000-05:00

(Ed. - Can you believe it another new author! Please welcome Paul Tatum @doctatum, a family medicine physician board certified in geriatrics and palliative care who practices medicine in at the University of Missouri in Columbia. Paul is no stranger to blogging and also posts at Geripal. Please welcome him to Pallimed! - Christian)

When I strike up conversation on the airplane and discussion turns to palliative medicine, the response tends to be either one of a blank stare and question about what is palliative medicine or a knowing smile and a ready story about how hospice and palliative medicine made a difference in the life of a loved one. I love the stories and they reinvigorate me. But to help the public with the questioning, blank stares, we still have a lot of work to do.

As part of the American Academy of Hospice and Palliative Medicine's Shaping the Future Campaign, one of the 3 key areas of focus is Raising Awareness. Each and every member of the HPM community should play a role in facilitating advocacy and raising awareness. A simple way we all can raise awareness is telling stories (with appropriate confidentiality precautions of course!) One powerful patient story is more compelling than a pile of data.

The master storytellers of our day and age are in film. Spielberg, Lucas, Abrahms, Lee are all master storytellers. Pallimed with the help of Elaine Wittenberg-Lyles at Clinical Communication Collaborative (@palcarecomm) has created a wonderful list of films that have palliative medicine themes. Go to the list and add more!

However notably absent from the film lists are documentaries. Documentaries come in many forms but at their best they can change minds and generate conversation. More on documentaries from the Lincoln Center Film Society here.

Good documentaries drive the audience to want to ask questions and learn more. Hosting community screenings of documentary film about serious illness can be an excellent opportunity to educate your community about palliative care. Universities, public libraries, and art house cinema venues are all excellent partners where your hospice or palliative care team can help host a discussion after a screening.It is a chance to tell the story and value of palliative medicine.

An excellent opportunity to get started is coming up June 21. The makers of I Am Breathing are calling for a global screening of their film to raise awareness about Motor Neuron Disease (Amyotrophic lateral Sclerosis, aka ALS or "Lou Gehrig's Disease.") I was fortunate enough to see an early screening at The True/False Film Festival, and the film is excellent! I Am Breathing tells the story, hopes, and coping of Neal Platt, age 34, during his last year of life with ALS. While the purpose of the global screening is to raise awareness about ALS, I can't imagine ALS without comprehensive palliative care early in the illness. Here's a chance to teach that palliative care is for serious illness anywhere in the disease trajectory.

Consider partnering with your local film community or library or university to host a screening. Click here for more details on hosting a screening. Partner with your local ALS neurology team to lead a discussion. Hey, you can build connections to Neurology too. Tell the story of ALS, but also bring the message of how palliative medicine can help with serious illness and can be used sooner. (Palliative medicine is not featured much in the film but they were actively involved. )

And add some documentaries to the Pallimed list of films that have palliative medicine themes.

2013 TEDMED Report: What ideas could we help spread?

2013-04-26T10:30:00.000-05:00

(Ed. - Please welcome another new blogger to Pallimed, Earl Quijada, MD (@equijada). Earl is a hospice and palliative care doctor in the Inland Empire of California. I first met Earl on Twitter and later at the 2011 AAHPM Assembly in Vancouver and I am very excited he is now a Pallimed contributor! - Sinclair)

I know I’m not supposed to say this but I’ll say it once - we’re not a death denying society. I’m starting to learn about death in nonclinical settings. My mind is opening and I’m stoked.

I just returned from 2013 TEDMED where the opening salvo encouraged me to drop my palliative care persona, make intellectual and emotional connections, and ask many questions. I was then immersed in thousands of disparate ideas.

Imagine my feeling when I realized that I don’t understand my patients. Patient perspectives are not seen. This problem, this theme was repeated.

America Bracho, CEO and President of Latino Health Access is solving this problem by turning patients into teachers in the same community. She is creating champions in neighborhoods to teach about diabetes. These teacher/patient relationships share social and environmental denominators. The result is an empowered community. The phrase “non-compliant diabetic” is fading. What if this happened in community where someone was dying? Would it be possible if patient education was done by someone who has gone through the same experience? Would the phrase “he’s in denial” fade? I think so. I want to know.

I feel that I possess listening and understanding skills but really had to take a second look when I realized that there is a whole patient vocabulary that I don’t recognize. Sally Okun, Vice President of Advocacy, Policy, and Safety at PatientsLikeMe is systematically curating a “patient lexicon”. Patients can’t be heard if patients aren’t understood. This patient lexicon will amplify voices so stories can be heard and understood.

An understood story is important. Amanda Bennett, Pulitzer Prize winning journalist and author of The Cost of Hope told a poignant story of her journey with her husband through his illness and eventual death. Through their courtship and marriage they did everything; they travelled, they adventured, they had many children, they had hope. Through his cancer, they "did everything". They had hope. They had directives that clearly stated to “stop everything” when there was “no hope” but they always had hope. They did not have a narrative for death. Denial was not a bug, it was a feature. What people called denial, they called hope. Stories need to be heard.

Michael Hebb

At TEDMED I was mostly an ordinary person. At lunch a CEO for a biotech company talked to me about her father’s death and how she will always remember kindness. On a trolley ride a designer explained how he is designing medical risk communication. He was interested in helping design conversations around death. At a party an EMR specialist talked about how she was moved by a home that housed the dying homeless. The topic of death is compelling because of it’s honesty. No one talked about symptoms, goals, or the normalcy of death. Just the honesty.

This honesty happens amongst ordinary people. I was not surprised when meeting other physicians that death was not on conversation. Michael Hebb, chef and “underground restaurateur, impresario, provacateur” is starting a project called, Let’s Have Dinner and Talk about Death. During these dinners, they talk about the beauty, mystery, fears, and hopes and the challenges of end-of-life planning. The wonder of this is that it’s done in a comfortable dinner setting. Michael stresses that these conversations should not be with physicians, nurses, or lawyers but amongst ordinary people. People want to talk about death when coupled with the right ingredients. Michael’s project is popular, it’s artsy and it’s potentially scalable. It’s such a great idea.

Perhaps the most difficult idea for me to understand is that of horizontal and vertical identity as described by Andrew Solomon, author of Far From the Tree and winner of the National Book Award. He describes horizontal identity as acquired from a peer group and vertical identify as usually respected identities from the parents. Horizontal identities are often viewed as flaws in which he describes deafness, sexuality, and severe mental illness. He heart wrenchingly describes painful ambivalence of parents between love and despair. Perhaps death is a horizontal identity that is overladen illness. Andrew proposes that as illness is moved to identity there is movement towards love and acceptance. I struggle calling death normal as I wouldn’t deafness or severe mental illness. There is no denying death, but recognizing that tension between love and despair.

People long to and are so grateful when they are identified. The artist Raghava KK said, "Teach perspective, learn empathy". He has it right. I'm taking a view and saying it again - we're not a death denying society. What do you think? Is this an idea worth spreading?

Photo Credit (some rights reserved on photos)
TEDMED Panel by Jerod Harris/TEDMED
Michael Hebb by Wayne Price - DeathOverDinner.org

Pallimed Blog Updates

2013-04-24T23:22:00.000-05:00

I'm sure some of you are surprised to see you email boxes filling up with Pallimed posts again. Since coming back from the AAHPM/HPNA Annual Assembly we have been busily working on a few projects behind the scenes as we look to the future of this website.

Energizing the base
We had a great meeting of Pallimed contributors in New Orleans during the New Orleans meeting in March. There were many fresh commitments from some of our key contributors, and you can see that both Lyle Fettig and Suzana Makowski have started writing again. The conversations sparked a energy which made all of us realize how satisfying, fun and important it is to talk about hospice and palliative medicine.

Adding new bloggers
We already have two new contributors this week and there are a few more in line. Fresh insight is always good, and these new writers are already bringing great ideas to the table.

Refreshing apps and blog
I have let me coding skills slide a little, but over the past month I have been making small tweaks to the apps and the blogs (including the comments system). Not all the kinks are worked out, but we are making progress. If you find any errors or issues, please send them to me so I can get them worked out christian@pallimed.org

Updating the subscription system
This is my next big project, so to really test out the new system you may see some more frequent posting as I try some options behind the scenes before it goes live. Instead of grouping blog posts all in one day, I will likely have periods where the posts come every day for a few days. There should be a lot of new features and flexibility for you the reader.

Integrating Arts & Humanities and the Cases blog to the main blog
One key change we all agreed on in New Orleans was to combine the three Pallimed blogs into one. The new subscription system will allow for you to personalize what content you want to see and how often. To get all the content into one blog for posterity, we will slowly be including historical posts from both sites to the main blog. All historical posts will be identified. The comments will be ported over as well but that may be a little challenging so if you see any hiccups, please share them with me.

We have some other big and fun changes coming up soon, but I'll save those for another post.

What's Your Vision of End of Life Care?

2013-04-24T09:28:00.000-05:00

(Ed. - Today's post is the first from Renee Berry @rfberry at Pallimed who is a digital media specialist with a strong passion and extensive knowledge about hospice and pallaitive medicine. Renee and I co-host the weekly hospice and palliative medicine tweetchat on Wednesday nights (along with Alicia Bloom). We are excited to have her input on the recent TEDMED conference where End of Life issues were featured. - Sinclair)

I noticed an interesting conversation starting on Twitter last week about an illustration drawn as a part of TEDMED's great challenges. TEDMED is an annual conference dedicated to breakthrough thinking in health and medicine. While it is independent of the original TED conference which brings people together from the technology, education and design fields, TEDMED's Great Challenges Program is a series of discussions around twenty complex issues in medicine designed to engage interdisciplinary thinking and conversations.

Palliative care physician, Earl Quijada attended the TEDMED conference last week and shared a photo (which can be seen below) of a sketch about some of the concepts and ideas being shared at the Great Challenges section dedicated to end-of-life care issues. This sparked an interesting conversation about what the illustration portrayed.

EOL #greatchallenges at #tedmed. Death is holding an "invitation" umm @ctsinclair @dianeemeier need help. #hpm. twitter.com/equijada/statu…
— Earl Quijada (@equijada) April 18, 2013

My initial thoughts can summed up in this quick list of 8 tweets...

@equijada 1. Quality of life is can be all about mortal life, it does not need to be a euphemism of an angel + energy + eternal life.
— renée berry(@rfberry) April 19, 2013

#TEDMED @equijada 2. Palliative medicine is about quality of life. It can be for people with serious illness that is not "advanced."
— renée berry(@rfberry) April 19, 2013

#TEDMED @equijada 3 Palliative medicine is NOT abt creating a good death. Research shows this language is not effective for public enagement
— renée berry(@rfberry) April 19, 2013

@equijada 4 While I agree we are a death denying culture, does that mean we push "talk about death" on people as a solution?
— renée berry(@rfberry) April 19, 2013

@equijada 5 Do we illustrate a "normal part of life" with a scary dark skeleton looming over a family's table while they eat?
— renée berry(@rfberry) April 19, 2013

@equijada 6. Can "more voices in the discussion" include groups who built the groundwork for solutions- @capcpallative, @aahpm, @hpnainfo?
— renée berry(@rfberry) April 19, 2013

@equijada 7 Take advantage of resources @getpalliative @caringinfo @nhdd @pallimed @geripalblog @chpcc @hospiceaction
— renée berry(@rfberry) April 19, 2013

@equijada 8 Palliative care is for anyone with a serious illness, from the point of diagnosis. It is much broader than end of life. #TEDMED
— renée berry(@rfberry) April 19, 2013

As more people become engaged and passionate about:

Advancing opportunities for early access to palliative medicine to relieve suffering and enhance quality of life for serious illness.
Providing hospice and quality end of life care.
Engaging the public around these related but not synonymous issues.

I am hopeful that people, organizations and initiatives will utilize the incredible work that has allowed palliative medicine to become the fastest growing medical specialty in the United States and a crucial element to the future of quality and innovation in healthcare delivery.

Other Notes:

It's awesome (and appreciated!) that TEDMED is featuring a great challenge on end of life!
An artist of course has free range to express their interpretation of messaging and in all honesty, while I have concerns about elements of this particular drawing, I really appreciate it because it points out an opportunity for a great discussion.

What do you think?

I'm interested in seeing the palliative care community continue to add commentary below. What do you think of this drawing? What does it say about where we are with messaging about death? Where are we about public communications about palliative care? How can we serve as a resource to people that want to be a part of the solution and ensure advocates can access quality information?

Prevention and Palliation: Together Forever

2013-04-15T16:42:00.003-05:00

What do the following patients have in common?

A 45 year old man who has a 60 pack-year history develops lung cancer and is diagnosed at an advanced stage.*
A 33 year old woman with post-traumatic stress disorder who has been drinking since the age of ten and develops fulminant hepatic failure.
An 82 year old man ends up in the surgical intensive care unit after a self-inflicted gunshot wound three months after his wife of 60 years dies.
The mother of a 55 year old woman with morbid obesity, obstructive sleep apnea, and pulmonary hypertension laments that the park nearby isn't safe for people to use.

All four patients are candidates for palliative care. All of them also have potentially preventable illnesses. When I see patients like this, I sometimes ponder their plight from a six-sigma perspective. From a societal, public health, and healthcare system standpoint, what were the six missed opportunities which could have helped ensure that the patient before me stood a chance to avoid their illness?** The healthcare system brings it's resources to bear too late. Is the patient with lung cancer a candidate for a tyrosine-kinase inhibitor? What are the benefits of pentoxifylline for the second patient? Should the third patient receive mannitol? Is the last patient a candidate for sildenafil? While not unimportant questions, at times it feels like rearranging the deck chairs on the Titanic. From day one of medical school, I had some sense of the importance of preventative medicine, but nothing has emboldened my advocacy for prevention more than my chosen career in palliative medicine.

Palliation and prevention aren't mutually exclusive, either. The patient with advanced lung disease who still smokes may have the goal of living long enough to make it to his son's wedding or to stay out of the hospital as much as possible. Thoughtful discussion of prognosis and disease trajectory may motivate him to finally move from the contemplation or preparation phase to the action phase of smoking cessation. The palliative provider can play a vital role in this type of tertiary prevention, even if it's just answering the question, "Why should I even bother at this point?" In some circumstances, prevention of disease may be impossible for the patient. The woman who lies comatose in the ICU after an intracerebral bleed may no longer benefit from blood pressure management. When the patient's son asks the question (with his own children present), "should we be concerned about our risk for something similar happening?" it should be recognized as a teachable moment.

April 16 is National Healthcare Decisions Day (NHDD). Advance care planning represents one important intersection between prevention and palliation. In serious illness, conversations between patients and physicians about the end-of-life correlate with several positive outcomes for patients and bereaved loved ones. While the conversations in this study occurred only months before death, this fits the mold of prevention: Taking action now to provide benefit later.

You may not have a serious illness. Your death probably isn't imminent. But catastrophic trauma or illness is still possible. You may not be able to speak fully to your wishes for or against specific interventions. You can still consider what you would value most if faced with a serious illness. More importantly, it's not too early to talk about it with your loved ones, especially the ones who would speak for you if you cannot speak for yourself. The NHDD site provides several helpful resources to facilitate this type of conversation as well as meaningful documentation.

To quote Ira Byock:

"I have an advance directive, not because I have a serious illness, but because I have a family."

When I meet with the family of a patient who cannot speak, I see it as my job to help families sort through the maze of options and align treatments with the patient's values. While this can be accomplished without any previous advance care planning, it's easier on all sides of the table if there has been open consideration of related topics by the patient before the illness. In a society that values autonomy and the right to self-determination, there's a palpable loss when the person under discussion doesn't have a voice. Advance care planning helps to mitigate this loss and brings your voice back to the table when you cannot speak. Like the patients at the beginning of this essay, I start to think of missed opportunities when advance care planning hasn't occurred.

by: Lyle Fettig, MD (@lfettig)

*Any resemblance to actual patients is purely coincidental, although I'm sure there will be resemblances. These scenarios are common, unfortunately.
**Not addressed here are issues of hereditary predisposition, personal responsibility, bad luck, or other causes which may be outside of our control.

How Does Physician Assisted Dying Work? Beyond philosophy and rhetoric

2013-04-10T23:34:00.001-05:00

The New England Journal of Medicine released an article this week on the experience of implementing a Death with Dignity program in Washington at a University based Cancer Center. In the Fall of 2008, the voters of Washington State passed the Death with Dignity act allowing for the legal practice of prescribing medications for the self-administration by a person with a terminal illness with the goal of ending their life. This can be described using a variety of briefer terms: physician-assisted suicide, physician-assisted death, medically hastened death and others. (For the record it is not technically euthanasia since that describes an act where a health care professional adminsters medication. And that is illegal in the United States.) In the NEJM article the authors refer use the term physician-assisted death, likely because it has been utilized as the most descriptive term that remains value neutral in regards to the presumed psychological pathology of an act of suicide.

This is an important article because it describes how this center went about actually implementing the Death with Dignity program including the following challenges: were their enough doctors to actually prescribe the barbiturates? How would patients know about this programs availability given that is what a legally accessible medical option? Do you put fliers in the waiting room? What if the attending refuses to participate?

To really understand how they approached this I strongly recommend you read the article regardless of your feelings for or against physician-assisted death. With this issue coming up repeatedly on state ballots over the past decade, it could very be legal in your state sometime in the next several years and you may find yourself and your fellow staff grappling with these same difficult questions. It is limited in that they only served patietns with cancer, and it would be interesting to see how patients with non-cancer terminal diagnosis were handled at this institution.

Other Pallimed Posts on Physician Assisted Death and Euthanasia

As has been seen in other reports on why people choose physician-assisted death, the main reasons were loss of autonomy, loss of enjoyable activities, and the loss of dignity. The center reports that feedback was all generally postiive.

One important piece of data that many people will wonder about is how many deaths are tied to physician-assisted death and is that number changing from year to year. You can always check the Oregon and Washington Department of Health websites as they are mandated to report this data on a yearly basis. In 2012, Oregon had 115 prescriptions with 77 deaths related to Death with Dignity. In 2011 (the last year reported), Washington state had 103 participants and 70 deaths.

The NEJM has also developed a case around physician-assisted death, but curiously they refer to it as physician-assisted suicide (PAS) differently than the authors of the article. At the end of the case you have the opportunity to give your opinion about whether PAS should be permitted. As of the publishing of this post there are 275 responses with 54% against PAS and 45% in favor of allowing PAS.

I would encourage you to take the poll and post your opinion on NEJM, but also to share your responses here with our poll as well. (Feel free to copy your opinion from the NEJM poll and post it here) Our Pallimed poll asks for no identifying information. Results will be shared here in aggregate with some commentary.

Make sure to check the supplemental materials for the NEJM article if you do have a subscription or library access as they actually include the policy from the hospital.

Loggers, E., Starks, H., Shannon-Dudley, M., Back, A., Appelbaum, F., & Stewart, F. (2013). Implementing a Death with Dignity Program at a Comprehensive Cancer Center New England Journal of Medicine, 368 (15), 1417-1424 DOI: 10.1056/NEJMsa1213398

End of Life in the News: Where are all the Palliative Care Teams?

2013-04-09T10:30:00.004-05:00

by Suzana Makowski

By now, many of you may have heard or read Charles Ornstein,(@charlesornstein) a Pulitzer Prize-winning senior reporter, on NPR or in ProPublica on "How Mom’s Death Changed My Thinking About End-of-Life Care." He tells of his mother's final days in the hospital, after having aspirated during the placement of a naso-gastric tube that resulted in cardio-pulmonary arrest and subsequent days in the ICU. He speaks to the sense of being alone and the lack of guidance in the process of end-of-life decision-making. My heart dropped when hearing this story - for his (and his family's) loss, the difficulty of the process so clearly expressed, and for the haunting silence and void of palliative care throughout the care and in his stories.

During the interview with Jorge Valencia from The Story, Mr. Ornstein outlined his wish to have had "someone that was not involved in this case at all to come in and offer a perspective." He did not want his decision to be rushed. He expresses how his experience changed his view of end-of-life care - heightening his awareness of how the media and politicians have "allowed societal slogans to prevent us from having sophisticated conversations about end-of-life care" and as a result have left families without any sense of support.

Mr. Ornstein reached out to an author of the Dartmouth Atlas (a family physician and researcher), to other experts in neurology, and to literature on the web for guidance and reasurrance, but the story didn't mention working with a palliative medicine clinician. Perhaps he did not meet with a palliative medicine clinician because of lack of access, or perhaps because of the mis-perception of our field. Perhaps he, like many others, did not realize in addition to being experts on alleviating pain and suffering, on caring for patients who are living with long-term life-threatening illnesses like cancer and dementia, we also are experts in helping navigate difficult questions about prognosis, medical decision-making - and especially in situations like these - not merely the questions of "whether to get another round of chemo, or to keep someone alive by putting a feeding tube int heir stomach or a tracheostomy as they're progressing to their death." It is in the grey areas that the specialist is called in, when the decisions are not clear, when the discussion is harder.

There is a lot of discussion amongst the leaders and board members of AAHPM, HPNA, and NHPCO about the need to work with the media to make better known what our role can be, to change our public image. Indeed, we have our work cut out for us. We are taking steps to increase understanding of our specialty - we have a patient website, www.palliativedoctors.org, we created a youtube video speaking to situation Mr. Ornstein writes, we tweet ferociously, and even our board's President, Amy Abernathy is planning to speak at this year's TEDMED, but we have a lot more to do. If the President of the Board of the Association of Health Care Journalists, who has written extensively on the US healthcare system and end-of-life care, is unfamiliar with palliative care as a specialty in medicine, nursing, and social work that could have intervened and offered the unbiased guidance in medical decision-making, as well as helping support patient and family to address the trauma and grief of their experience, then surely others without his professional interest who face similar healthcare situations would not know to turn to us.

I agree with Mr. Ornstein: we need help from our politicians and from CMS leadership to recognize the both the work and value of having the conversation, as well as the expertise it takes when done well to assure families the guidance, support, and non-abandonment they deserve when facing the toughest of decisions - how to care for patients at the end of life, especially when it is unclear how near that end truly is.

I encourage us to take Mr. Ornstein up on his request to expand the dialogue with healthcare reporters about end-of-life care and to answer Mr. Valencia's question on how to "make this conversation more public and less lonely."

Lastly, I can't help but think how different his story might have been had palliative care been part of his mother's and family's care during those days in the ICU. We may not have changed the outcome or the weight of grief, but I am certain palliative care could have offered another perspective, to listen, to lend strength, and to assure the family would not have felt so alone.

Basketball, The Presence of Suffering, and the Practice of Medicine

2013-04-04T21:07:00.001-05:00

It's the first week of April, and we're on the verge of the penultimate games of the NCAA Basketball Tournaments. Since only four teams remain, chances are good that your favorite team is out of the tournament. As someone who has experienced that feeling 25 times over the years (but who's really counting?), I offer my condolences. To the few who still have a team in the tourney, condolences are pending for 75% of you.

In honor of March Madness, I offer a challenge. Watch the video below and follow the narrator's instructions to count the number of times the team with the white shirts passes the ball.

In medicine, the team with the white shirts passing the ball back and forth represents many of the activities of medicine. Look at all the energy which goes into deciding on the best chemotherapy regimen, the optimal time to extubate, whether to proceed with a coronary artery bypass graft or manage medically, or to get a PET scan to rule out metastases before operating. Also, it represents titrating analgesics to reach the patient's goal for pain control, discussing code status, talking about the last game to establish rapport, and educating about the benefits of hospice.

The team with the black shirts represents many things as well. Your pager going off three times in five minutes while trying to talk to a patient, the patient in the window bed launching unhelpful editorial comments, that pesky ache adjacent to your right shoulder blade, your kid waking you up three times the night before, the patient you had last year with the same diagnosis who responded unexpectedly poorly to the usual treatment, and that presentation you're scheduled to make in two days which you haven't started. It's also the TV being on in your patient's room with the channel tuned to the game featuring your favorite school. (Should it take a palliative care rotation to help one learn the value of turning off the TV?)

Medical school taught us well how to watch the team wearing the white shirts. There's so much happening in the video of medicine, it's easy to miss the suffering of the patient and their loved ones. In his classic treatise, "The Nature of Suffering and the Goals of Medicine," Eric Cassell defined suffering as a threat to the integrity of personhood. One should not equate this with a horrible symptom: The pain of natural childbirth is typically excruciating yet transient and soon eclipsed by the joy of the newborn child. Cancer pain which is now controlled by morphine may still "cause" suffering if the person fears the inability to fulfill one of their central roles in life. What if the pain comes back and I'm unable to make it through my son's graduation? What if the response to cisplatin/etoposide isn't durable? How long will it be before the other shoe drops? Unique to the individual and potentially isolating, one person may struggle with these questions given a particular illness or symptom while another person may struggle with an entirely different set of questions. We maintain hope that by keeping our eyes on the ball, maybe the questions will stop appearing. When faced with a serious, incurable illness, if a question fades you can count on another to appear, all the way through the loved ones' grieving process and beyond. We have shockingly little control over this fact.

I take pride in my expertise at watching the guys in the white shirts pass the ball around. This pride led to slight embarrassment when I watched the video at an AAHPM pre-conference conducted by Epstein and Back entitled, "Witnessing Suffering: An Introduction to Mindful Practice and Mindful Communication." I say embarrassment, because admittedly I found myself just as surprised at the end of the video as when I saw the video the first time about a year ago.

What to do with suffering we may not be able to "fix"? First, learn to recognize it. You don't stand a chance to fix something that you haven't diagnosed. Second, pay attention so you don't miss it. Here's where things get more complicated. You are still responsible for keeping your eyes on the ball. One might argue that suffering should be "the ball." You won't find any argument here, but the rest of it is still there. Mindfulness, or the practice of bringing one’s complete attention to the present experience on a moment-to-moment basis, may help you with all the layers present, some which may opacify the lens through which suffering may be found.

If this isn't something you've considered before, you can start by thinking of the this as an exercise in efficiency. Where there is suffering, you will likely find what is most important to your patient at that moment and from there, decide how much focus to place on everything else. Which of your many potential actions will maximally reduced the suffering? You will find yourself closer to the heart of patient-centered goals of care.

Sometimes, there are no balls, no players- nothing which can be "fixed" and only a patient, a physician, and suffering. In this moment, you cannot fulfill the task of fixing problems which society assigns to physicians and we to ourselves. In our own isolation, we can be mindful of it in the present moment, be aware of the feeling of inadequacy, increase our focus on the person sitting in front of us and thus offer hope of reducing that person's isolation.

Need research regarding the benefits of mindfulness to the clinician? Here's just one study. It demonstrated that primary care physician participation in a mindful communication program was associated with short-term and sustained improvements in well-being and attitudes associated with patient-centered care.

Have I piqued your curiosity with this brief introduction? Ample information about mindfulness exists on the internet. Epstein and Back pointed to an intriguing four day workshop as an opportunity for clinicians who face serious illness and mortality in their practice to learn more about the topic.

by: Lyle Fettig (@lfettig)

Death Panels a Solution to Unwanted Intrusion at End of Life

2013-04-01T01:00:00.000-05:00

by Abe R Feaulx, Special Reporter

When death is near, and no cure is available, more and more patients are turning to hospice to meet their end-of-life needs. To meet those needs, more and more hospice agencies are building hospice homes. These state-of-the-art facilities provide a place for patients to spend their final days, away from the commotion of the hospital or the dreariness of the nursing home. A hospice home is a free-standing facility designed to provide a private and comfortable setting where patients can die peacefully, often surrounded by friends and family. Yet many hospice homes are finding that privacy can be difficult to maintain, especially in the final hours.

“We were sitting next to dad at the hospice home as he took his final breaths, and someone barged in to ask what he wanted for dinner,” said Tim Jordan, whose father was dying of cancer. “She meant well, but I wish there had been some way for her to realize what was going on, without me having to say ‘he’s dying here.’ “ Nancy Underhill had a similar experience: her mother was approaching death just as a member of the maintenance staff walked in to repair the broken television remote. “We mentioned the remote when she first arrived, but when they came in to fix it two days later, she was near the end and we were saying our goodbyes. The timing couldn’t have been worse.”

One hospice agency plans to put a stop to inadvertent intrusions in the final moments of life. Happy Endings Hospice, one of Fisherville's leading hospice providers, recently opened their hospice home in nearby Grim. The agency incorporated an innovative feature: Death Panels™. “We originally wanted to make signs to hang on the door, but that seemed too gauche,” said Cecil E. Saunders, chief engineer for the project. “Then someone on our design team had the bright idea to add floor-to-ceiling sliding blinds in each room.” The large panels, tucked away in the wall, easily slide on tracks built into the ceiling, and create instant privacy. As the patient’s final moments approach, the panels encircle the bed, allowing family and friends to say goodbye in an intimate and secluded space. The Death Panels™ also send a clear message.

“When I see Death Panels™ extended, I know to stay out unless I’m called,” says Jane Parrish, hospice nurse. “I think it is a wonderful way to protect patients from unwanted disruption.” The panels each have a unique theme that matches the décor of the surrounding unit. One room, which features design elements reminiscent of ancient Greece, utilizes panels depicting Thanatos, the Greek god of death. Another room, with a more modern feel, exhibits panels covered in a simple, charcoal grey. Will Levine, the facility’s chief designer, explains the fashion choice: “I heard that grey is the new black.”

While Death Panels™ have been well received by most, they are not without controversy. Former Alaska Governor Sarah Palin created a national stir when she complained that the new Affordable Care Act would mandate the establishment of death panels. “I’ve read through the entire law, and I just can’t find it in there,” says Angela Harp, director for policy at Happy Endings. “I don’t understand the big deal. I mean, they’re just big slabs of wood that slide around. Quite frankly, I wish Death Panels™ were covered, because those things were expensive.” Cost aside, Angela is hoping that other hospices turn to Death Panels™ as a means to ensure that patients’ end-of-life wishes are honored. “If you or a loved one is comparing hospice agencies,” says Angela, “ask them if they use Death Panels™.” You may be surprised by the answer.

Find more great articles by Abe R Feaulx on Pallimed here:
Specialty now known as Hospice, Palliative Care and Puppies

State of the Science from the 2013 AAHPM Annual Assembly

2013-03-17T13:00:00.000-05:00

The State of the Science plenary is one of my favorite traditions at the AAHPM Annual Assembly. This year, Jay Horton and Kim Johnson took the lead in presenting analyses of some of the previous year's most important hospice and palliative medicine research. For those attendees interested in seeing their slides again, you can find them here.

Some of the research below further confirms our previous understanding of the state of the science (for instance, the studies on the low utility of feeding tubes in many circumstances). Other studies provide quality randomized controlled trial data on questions which have nagged our field but where previous RCT data are minimal or completely lacking (e.g. parenteral fluids near end of life and ketamine for cancer pain).

We'd love to hear what you think about each study. Feel free to comment on the blog. If you like a study, you can further disseminate it by Retweeting it directly from this post!

Associations between end-of-life discussion characteristics and care received near death: a prospective #hpm13 ncbi.nlm.nih.gov/m/pubmed/23150…
— Lyle Fettig, MD (@lfettig) March 16, 2013

A randomized, placebo-controlled trial of acupuncture in patients with COPD #hpm13 state of science ncbi.nlm.nih.gov/m/pubmed/22905…
— Lyle Fettig, MD (@lfettig) March 16, 2013

Barriers to conducting advance care discussions for children w/ life-threatening conditions. #hpm13 state of science ncbi.nlm.nih.gov/m/pubmed/22392…
— Lyle Fettig, MD (@lfettig) March 16, 2013

Surrogate decision makers' interpretation of prognostic information: a mixed-methods study. #hpm13 State of Science ncbi.nlm.nih.gov/m/pubmed/22393…
— Lyle Fettig, MD (@lfettig) March 16, 2013

RCT to assess the efficacy/ toxicity of subcutaneous ketamine in management of cancer pain. #hpm13 State of Science ncbi.nlm.nih.gov/m/pubmed/22965…
— Lyle Fettig, MD (@lfettig) March 16, 2013

Feeding tubes and the prevention or healing of pressure ulcers.#hpm13 State of science ncbi.nlm.nih.gov/m/pubmed/22782…
— Lyle Fettig, MD (@lfettig) March 16, 2013

Does feeding tube insertion and its timing improve survival?#hpm13 state of science ncbi.nlm.nih.gov/m/pubmed/23002…
— Lyle Fettig, MD (@lfettig) March 16, 2013

Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, RCT #hpm13 state of science ncbi.nlm.nih.gov/m/pubmed/23169…
— Lyle Fettig, MD (@lfettig) March 16, 2013

meaning of IV/sq hydration 2 family caregivers & pts with advanced ca receiving hospice care.#hpm13 state of science ncbi.nlm.nih.gov/m/pubmed/22459…
— Lyle Fettig, MD (@lfettig) March 16, 2013

Influence of hospice on NH residents with advanced dementia who received Medicare-SNF near the end of life. #hpm13 ncbi.nlm.nih.gov/m/pubmed/23110…
— Lyle Fettig, MD (@lfettig) March 16, 2013

David and Debbie Oliver's AAHPM Plenary: Comforting Others While Living With Illness

2013-03-15T22:58:00.001-05:00

One could write pages about David and Debbie Oliver's remarkable plenary presentation Friday at the American Academy of Hospice and Palliative Medicine Annual Assembly in New Orleans. David has stage IV nasopharyngeal carcinoma and has taken his cancer journey to the public. Before I go any further, I'll refer you to David's book, "Exit Strategy: Depriving Death of Its Strangeness," Paul Tatum's Interview with David at Geripal from August 2012, and below, see a clip from David's Cancer Videoblog in which he talks about cancer and palliative care.

Of the many themes which arose from their presentation, I was especially struck by David's statements about the disclosure of his diagnosis to others and his frequent need to comfort the person receiving the news. Our culture struggles with the language to respond when surprised by the news that someone we know or meet has a serious illness. David talked about his 94 year old mentor telling him, "don't panic, don't struggle, relax, and accept it" in the face of the illness, and he's really taken the advice to heart. Yet I'm sure that many people he meets project their own fears about developing a serious illness, and thus assume that every day is a monumentally and persistently dour struggle. (I've had medical students and others remark to me before about a terminally ill patient, "how can they be in such a good mood?" as if this were forbidden once the illusion of immortality has been cast aside.)

I think David has the right formula for responding to people. He deprives death of it's strangeness by providing comfort to them.

I ask most patients what they have told their loved ones and how their loved ones are coping with the patient's illness. I don't routinely ask patients how others respond to the news of the illness. What happened when you told your hairdresser? The doorman? Your colleagues? Was their response comforting, unsettling, or downright bothersome? Do you feel comfortable talking to others about it? Perhaps those conversations go well. But when they don't go well, it results in social and psychological suffering. As David said today, "Don't move too quickly through the (anticipatory) grief!" (i.e. I'm still alive and treat me like I am!)

I briefly surveyed twitter and a few people in person, and there was general agreement that this type of question usually isn't asked (at least by many physicians) although some responded saying that they did usually or always ask about how others respond to their illness disclosure. I hope this is an opportunity to reflect on the value of this line of questioning and how we might help patients communicate more effectively with those around them in the interest of their social well-being.

Here's a study which further clarifies the emotional work of disclosing a breast cancer diagnosis.

What The AAHPM Annual Assembly Means To Me

2013-03-11T23:35:00.001-05:00

I really love my field. Both sides hospice and palliative medicine. Both sides academic and community. Both sides profit/not for profit. Both sides friends and soon to be friends. Because to me they are not really sides or artificial tribes that exist because we humans really like to label things into groups. To me this is one whole big family and the Annual Assembly feels like a really good family reunion to me. Not the family reunion of TV or movie tropes where everyone dreads it, but the real type of family reunion where you see people you have not spoken with in a year or more, but you drop right into a regular conversation like you see each other every day.

2013 will be my 10th Annual Assembly in a row. I started in 2004 in Phoenix, AZ and have enjoyed each year more and more. I'm sure some of you may be asking how my colleagues let me go so often. Well some years I only went for one day or less like in Tampa, when I flew in for the Pallimed party on Friday night and left Saturday afternoon. These past few years I have been on the board which is pretty much mandatory attendance. Other years, I submitted and had talks selected which helped insure a trip to the Annual Assembly. No matter, I just wanted to try and get there and see my HPM family again.

I love the learning that goes on there. Fantastic lectures, new ideas, meeting incredibly smart and talented people who love this field with an intense passion. Sometimes I have tried to explain these feelings to family or friends, and I get some quizzical looks about why a medical conference has me so filled with anticipation. So that is how this blog post came to life.

I will be posting on Twitter (#hpm13), the Pallimed Facebook Page, and guest blogging on the AAHPM blog all this week, so if you are not able to go please follow along and share the learning. I will also be taking my camera everywhere I go, because I have realized I have not taken nearly enough pictures at the Annual Assembly in relation to how important the people there are to my life. So if I see you I will likely ask to take a picture with you, because there are a lot of memories that are fading already after 10 short years.

Please share below what gets you excited about the Annual Assembly

Photo Credit: "secondline" by Flick User Swampier

7th Annual Pallimed and Geripal Gathering

2013-03-11T22:57:00.001-05:00

Are you excited about the AAHPM/HPNA/SWHPN 2013 Annual Assembly this week? I hope you or at least your colleagues are able to attend. We will be continuing the tradition of gathering readers and contributors to this blog and Geripal. It has grown over the years naturally and we are excited to meet other people you may only nknow by a screen name or email address.

There will be a strong Pallimed contingent this year with Drew Rosielle, Lyle Fettig, Jeanette Ross, Holly Yang, Suzana Makowski, Thomas Quinn, and Amber Wollesen in attendance, so please rech out and say hello.

We do have a date and time for the party - Thursday night starting around 9pm, so you have enough time to have dinner with colleagues and friends.

But we don't exactly have a location...or locations...or maybe we do and we are keeping it a secret...regardless we aren't saying quite yet. If you have any tips on a good location that is easy to get to, please email us, tweet us (#hpmparty), or post a suggestion on our Facebook page.

You can also RSVP on the Facebook Event page if you may be joining us so we can make sure and get you the update. We will be using #hpmparty to announce the location as well.

Here we come New Orleans!!!

2010 Boston

Prognosis: Weeks to Months – On the End of an Era at San Diego Hospice

2013-02-14T13:28:00.000-06:00

by Suzana Makowski

On February 14th, 1977, a group of volunteers offered support to 10 patients who were nearing the end of life, and in doing so formed the foundation of what would grow into the largest academic hospice in the US – caring for upwards of 1000 patients each day at its peak, and training hundreds of hundreds of clinicians in the specialty of palliative care. Just a day shy of its 36^th anniversary, it was announced that San Diego Hospice would be closing.

As an alumnus of the fellowship program at San Diego, I am one of many who are grieving this news. I write here, not so much to share my grief, but rather to bring to light concerns that this announcement raises, to present questions on how the palliative care community (in its broadest sense – i.e. including hospice) should respond, and to call us all to arms. After all – we have to be certain that the care of patients at the end of their lives continues to improve in the most compassionate, cost-effective way: providing the right care, at the right time, in the right place.

Why does it matter that San Diego Hospice is closing?

Care for the most vulnerable in San Diego has been compromised:

First, it strikes me that only a few months ago, San Diego Hospice was caring for more patients each day that most hospitals do. These patients are often frail, needing intensive support, complex medical care and medication oversight. The announcement of closing, is not unlike closing of an academic hospital that cares for 1000 patients within their walls.

A difference between the regulations that hospitals face and those of hospice are the mandates around entrance: public hospitals have to follow the EMTALA rule – if anyone shows up to the doors of an emergency room, they must be cared for by that hospital. In hospices, the Medicare rules hinder entrance: if a patient wishes to stay home, avoid hospitalizations, focus on the alleviation of symptoms and not pursue aggressive interventions they can only receive hospice care if two physicians document that the patient has an illness that, if following its natural course, has a greater than 50/50 chance of leading to the patient’s death within 6 months.

Ironically, now this 6-month prognosis is defined is increasingly being made not by the physicians and nurses caring for patients, but by Medicare intermediaries. This is the reality of Sarah Palin’s death panel: the laws defining hospice regulations require often well-intended bureaucrats to determine who can receive hospice care.

You may object to this statement – after all, wasn’t Ms Palin speaking of preventing patients from receiving care that prolongs life? Well, Palliative care provided through clinics and hospices has been shown to not only alleviate pain and suffering of patients, provide comfort and practical support to their caregivers, but also that actually can increase patient’s longevity without needing even more expensive hospital-based care.

Why should hospices who appropriately enroll patients and who provide excellent palliative care be penalized for the outcome we expect for many patients… stabilization of symptoms and even a prolonged prognosis? It does not mean the patients are not dying, because they are, but like many other medical interventions, hospice can change the trajectory for the better.

The death of the largest academic hospice:

San Diego Hospice did not only serve patients in the county – through its training programs, it has built a foundation of palliative care experts who care for patients around the world.

Its US physician fellowship program was the largest and one of the most well-regarded training programs in the country. Training up to twelve fellows a year, largely through the generous support of local donors, it will be remembered as a program that helped build the next generation of palliative care physician leaders in the US. To date, San Diego Hospice has graduated 78 physician fellows and 1 psychiatry nurse practitioner fellow.

Our specialty is already concerned about workforce challenges: having enough palliative care experts to meet the need of our patients, communities, hospitals and hospices. The loss of this program will only add to this shortage.

Of immediate concern is how our palliative care community nationally will respond to the needs of current fellows and those who were anticipating going to San Diego in July? Gary Buckholz, the fellowship director has been working diligently with the leadership at Scripps Health and San Diego Hospice to assure that the current fellows will finish their training and make the number of physician fellows trained 88. I only hope that our government and Medicare supports the immediate growth of other palliative care fellowships around the country to make up for this imposed loss.

From a fellowship applicant: "I had only the vaguest of hunches that I was applying to an extraordinary institution, an epicenter of the coming and desperately needed renewal of medicine, when I submitted my application for a fellowship position. Now I know. I am therefore more eager than ever to have chance to work and learn at San Diego Hospice, to immerse myself in the waters of the quiet revolution that I surmise is taking place there in hopes of becoming part of it and helping to extend it to other quarters."

Physicians do not just come from within the 50 states to train at San Diego, but from all corners of the globe. Under the leadership of Frank Ferris, Shannon Moore, and Holly Yang, the International Programs trains and supports international physicians in clinical skills and leadership training from every continent (minus Antartica – I think most of their residents have PhD’s.) They also provide interdisciplinary training for programs on the ground in Asia, Europe, North and South America and the Middle East. This program, like the US fellowship program, was largely funded through grants and donations. How will the palliative care community respond to continue this work?

San Diego Hospice also used to house the largest training program in bereavement care in the country.

A call to arms

The conversation in Washington DC about healthcare reform has not ended, but somehow the discussion about how to care for patients nearing the end of life is less prevalent in the news of late. It’s time to change that.

Congress is taking a State Work Period next week – your congressmen and women will be home for the week of President’s day. This is a time to set up meetings with them and speak up about palliative care and hospice. (It will be a break from the many meetings sure to be held around gun control.)

Save hospice!

Current Medicare regulations requiring the 6-month prognosis hamstring hospices and create an artificial barrier to allowing the sickest of our nation’s patients from accessing the most appropriate care in the most appropriate setting. While the intention of these regulations is to avoid abuse and thus avoid cost, it actually is adding to the cost of care, by preventing patients from having the needed supports at home and often giving them little choice but to go to hospital. Hospice care should not have such rigid entry requirements. Entry should not be based on criteria that are not evidence based and that have not evolved with the science over the last 30+ years. Hospice should also be provided to patients in nursing homes – as an alternative to acute nursing home care.

Fund a fellow!

The workforce shortage of palliative care is worse than that of any other specialty. Current fellowship positions will not meet the growing demand. As your congresswoman to lead the effort to help build the workforce who can help lead the efforts of true healthcare reform – by assuring compassionate, high quality care, cost-effective care for the most sickly of our country’s patients.

Capture the legacy of San Diego Hospice and the Institute for Palliative Medicine

I remember walking into Charles von Gunten’s office in San Diego and seeing a photograph of him with Dame Cicely Saunders at St. Christopher’s hospice. That photo needed no words to impart the significance of legacy. I never met Dame Saunders, nor did I visit St. Christopher’s in its hay-day. But those pictures and the stories I hear carry significance.

So my last request is this. Share your stories and pictures here. Let’s create a means to secure the history of San Diego Hospice.

From Dame Cicely and from all of us across the globe to the family of San Diego Hospice:
“You matter” (and always will)

PPS Trajectories in Hospice

2013-01-27T22:48:00.000-06:00

Functional status is all the rage in research these days, especially with the impending but often delayed roll out of ICD-10. Any seasoned hospice and palliative care (HPC) clinician will tell you how critical functional status is to understanding trajectories of patients as function has been part of our assessment for quite a long time. Most of us know functional assessments through the more clinical acronyms of ADL (Activities of Daily Living) and the PPS (Palliative Performance Status). On a whole HPC staff routinely use function as a key metric of prognostication, but we have not really had a lot of data that looked beyond PPS at admission.

This week in the Journal of the American Geriatric Society, Pam Harris, Joan Teno, David Casarett and the CHOICE* group published Patterns of Functional Decline in Hospice Care, an important insight into the dynamic (or sometimes not quite so dynamic) change in functional status (as measured by the PPS) for patients who died on hospice.

The data all came from three hospices (KS/MO, PA, FL) using the Suncoast electronic medical record and looked at nearly 9,000 patients who died on hospice services and their PPS over the time they were admitted to hospice services. The findings note three basic trajectories that emerged: cancer and stroke, cardiac and pulmonary, and debility and dementia:

Disease group PPS Decline

Cancer 8.44/week

Stroke 7.67/week

Pulmonary 5.02/week

Cardiac 4.53/week

Dementia 1.98/week

Debility 1.86/week

(Note: The above data are weighted average across groups and not indicative of any one patients average decline. Thus the ability to readily apply to any individual patient is challenging to say the least.)

The data do help give us data to back up what many of us observe naturally in hospice, that patients with cancer have a short time on hospice marked by significant decline, and those with dementia and adult failure to thrive tend to have slower rates of decline and therefore may have longer lengths of stay.

Two interesting findings did come up which could have an impact on how medical directors interpret hospice eligibility guidelines. First, of the 23% of patients who had a PPS recorded on the last day of life, 36% (weighted distribution) had a PPS of 40 or greater (mostly 40 or 50). Those patients with a PPS of 40 or greater tended to be male, white and carry a cancer diagnosis. Second, approximately 12 % of patients actually had an increase of PPS during this retrospective period, which is important to acknowledge because they still died. This is good evidence that an improvement of PPS alone should not necessarily disqualify someone from hospice eligibility. PPS decline is not a one-way street.

Some limitations of the study are important to realize before you make a drastic change in how you use functional assessment in determining eligibility. The authors only analyzed patients who died during the 10 month follow-up period, but since you may try to apply this data prospectively instead of retrospectively as the study did, you will not know as you observe the decline of patients if they will die in the 10 month follow-up period or not. It may be best for you to replicate this own study with your own team or own organization as a QAPI study (or even better publishable research!) so you can best understand how this applies to your unique case mix of hospice patients.

I highly recommend you bring this study into your next IDG and discuss how it applies to your work in hospice and palliative care. I’m excited to see more studies come from the CHOICE group and you can see them at the AAHPM meeting in New Orleans in March at one of the paper sessions.

* CHOICE = Coalition of Hospices to Investigate Comparitive Effectiveness

Harris P, Wong E, Farrington S, Craig TR, Harrold JK, Oldanie B, Teno JM, & Casarett DJ (2013). Patterns of Functional Decline in Hospice: What Can Individuals and Their Families Expect? Journal of the American Geriatrics Society PMID: 23347201

Photo Credit: normalityrelief via Compfight cc

Committee on Transforming End of Life Care is Incomplete

2013-01-16T15:32:00.000-06:00

In September 2012, the Institute of Medicine made a call for experts in the scientific, technical and medical professions to be considered for a "Committee on Transforming End of Life Care." This effort is a follow-up to the important 1997 IOM report Approaching Death: Improving Care at the End of Life. This week they released the preliminary committee members for a short period of comment. Here is the list of members:

Philip A. Pizzo, MD (Co-Chair), Stanford University School of Medicine
Mr. David M. Walker, CPA (Co-Chair), Comeback America Initiative
Patricia Bomba, MD, FACP, Blue Cross and Blue Shield Association
Eduardo Bruera, MD The University of Texas MD Anderson Cancer Center
Rev. Charles J. Fahey, MSW, MDiv, Fordham University
Pamela S. Hinds, PhD, RN, FAAN, Children's National Medical Center
Dr. Karla F.C. Holloway, PhD, MLS, MA, Duke University
Ms. Naomi Karp, JD, Consumer Financial Protection Bureau
Jean S. Kutner, MD, MSPH, University of Denver
Bernard Lo, MD, University of California, San Francisco
Salimah Meghani, PhD, MBE, RN, FAAN, University of Pennsylvania, School of Nursing
Diane Meier, MD Mount Sinai School of Medicine
William D. Novelli, MA Georgetown University
Stephen G. Pauker, MD Tufts University School of Medicine
Ms. Judith R. Peres, Altarum Institute
Mr. Leonard D. Schaeffer University of Southern California
W. June Simmons, Partners in Care Foundation
Joan Teno, MD, MS, Brown University School of Medicine
Fernando Torres-Gil, PhD, MSW, University of California, Los Angeles
James Tulsky, MD, Duke University

You will surely recognize many names from this list. They have assembled a fantastic panel of committee members with many different experiences. We should all be very excited to see what great combination of stories, data, and leadership emerge from this endeavor. There are people on this list with backgrounds in: Public Health, Public relations, Pediatrics, HIV, Cancer, Education, Ethics, Research. Psychiatry, Decision Making, Cost/Benefit Research, Health Policy, Cardiology, Geriatrics, Internal Medicine, Communication, International Health Care, Epidemiology, Catholocism, Aging, Pain, Minority Populations, Women's Studies, African-American Studies, Disability, Quality Improvement, Accounting, POLST, and Medicare/Medicaid.

Yet in looking through this list, I kept feeling something was missing. (No, it wasn't the fact my name did not make the list, although for full disclosure I did work with peers in submitting my name for the list.) So I read their bios in more detail to examine more closely what was leaving me unsettled.

The first thing which stood out to me was the lack of hospice representation from leaders in our field. Only Dr. Teno's bio lists any current affiliation with a hospice organization. To me it appears the emphasis is weighted heavily towards academic palliative care.

Don't get me wrong, I love academic palliative care. Heck it is one of the main reasons this blog even exists. But if this committee is going to tackle the complex task of "Transforming End of Life Care," I think they would ~~want~~ need a few representatives from the part of the health care system which provides care in 45% of all US deaths (1.1M - NHPCO 2011 data). A quick snapshot of potential candidates is the list of AAHPM past presidents: Cooney, Crossno, Muir, Twaddle to name just a few. I'm sure there are other great candidates out there as well.

The second thing which was noticeable was the lack of any fellowship trained physicians in hospice and palliative care. 'But Christian, aren't we still in a very young age for fellowships?', one may ask. Pish posh, there are many of my peers and those who trained before me who have accomplished much in a short time: Tara Friedman, Gary Buckholz, Holly Yang, Drew Rosielle, Suzana Makowski, Eric Widera, Alex Smith, David Wensel, Gordon Wood, we can keep going. Having a physician who has gone through a fellowship brings experiential knowledge from living through the educational process. Plus, it may not be a bad idea to have a few younger professionals to prepare for larger roles and succession to these many great leaders.

And lastly, it was pretty obvious from looking at the academic affiliations, we were dealing with city slickers from the coasts for the most part. A summary of the lack of geographic diversity:

6 from California
4 from Washington DC
3 from New York
2 from North Carolina
1 each from Colorado, Connecticut, Massachusetts, Pennsylvania, Rhode Island, Texas

Sure I may be a little bit sensitive being from 'flyover country' but of all our great talent in the US I'm pretty sure it is not all on the coasts and in the cities. What about Carolyn Nystrom, RN from Ketchum, ID, winner of the 2012 Sojourns Award, who runs a community based, freestanding, non-Medicare, full service hospice to 2644 square miles in rural Idaho? She might have some ideas on transforming end of life care.

So these are just a few things that I think are missing from the IOM Committee on Transforming End of Life Care. But did I just write all of this to complain? No.

"Complain about the way other people make software by making better software." - Andre Torrez

We all have a chance to give our voice, which is a wonderful gift from the IOM. So if any of these issues resonate with you, give feedback! At the end of the committee list page is a Feedback button, and you have until the 30th of January to submit. If you see other omissions you think are important please share.

In conclusion, I'm really glad the IOM is revisiting this issue after almost two decades. I have great confidence in the expertise of the committee so far, and expect great outcomes from the process. But if you think there needs to be a little bit more diversity now is your chance to give input.

Reference: Summary table of different characteristics of the panel via Google Docs
*Edit* 1/17/2012 - Fixed errant link to IOM Feedback page.