Tuesday, August 25, 2015
The ground is shifting under our feet as our society seems finally to be looking at the nature of human mortality and the way we care for each other…or don’t…as we complete our lives. Zubin Damania, MD aka ZDoggMD is now part of that conversation since the release of “Ain’t the Way to Die” his first not-so-funny medical parody music video focused on how we so many of us die in the hospital in a not-so-funny way. A hospitalist refugee from burn-out at a big academic center, ZDogg continually reinvents himself as an “off-white rap star” with a passion for saying what needs to be said with growing impact.
That doesn’t surprise any of us that have been practicing professionals in palliative care and hospice over the last 35 years. We have done our best to share our perspective and to inform our society. And our society has only just now seem to be paying attention. I sat down with ZDogg for an interview to address a question raised by Atul Gawande in an interview before his plenary at the AAHPM Assembly, “…why the hell aren’t people listening to you?”
Michael D. Fratkin, MD is a palliative care physician and founder of Resolution Care, a unique palliative care practice in Northern California. Resolution Care was featured on Pallimed in Dec 2014.
Tuesday, August 25, 2015 by Pallimed Editor ·
Monday, August 24, 2015
Vermont is the sixth smallest in area and the 2nd least populous of the fifty United States. Medicare data from 2013 show that Vermont had among the lowest hospice penetrance rates in the country along with New York, Wyoming, South and North Dakota, and Alaska. While enrollment in hospice has been associated with improved survival for CHF, colon, lung and pancreatic cancer, improved quality of care for persons dying of dementia, and improved mortality outcomes in surviving widowed spouses, I find knowledge of these research findings to be low. And while a sense of comfort and relief for millions of Americans is provided by hospice every year, it is frequently felt to be a service for the imminently dying.
Since beginning my role as Hospice Medical Director for BAYADA Home Healthcare in Vermont and New Hampshire in 2013, I have spoken with health care providers of many disciplines in the region about why hospice utilization may be so low. Hospice practice in rural and remote areas is captured in population based data that can be broken into counties but is poorly represented in hospice and palliative care literature. Its day to day challenges and successes are learned from actual and shared experience.
This #hpm chat encompasses an international group of participants who bring a diversity of experience to the topic of building high quality and lasting hospice programs in rural areas. My aim is to pose questions that will lead us to common ground for building these programs in order to meet the end-of-life needs of our patients, families as well as hospice clinical and administrative staff.
Questions that will be posed during #hpm chat:
- How is access to hospice care a barrier for patients and families where you live?
- How is the availability of experienced staff a barrier?
- Have prescription monitoring programs or pharmacy dispensing practices interfered with your ability to dispense opioids?
What: #hpm chat on Twitter
When: Wed August 26, 2015 - 9p ET/ 6p PT
Host: Dr. John M. Saroyan (@jmsaroyan)
Follow @hpmchat on Twitter for all the latest on #hpm chats.
If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tweetchat.com, for ease of following.
You can access the transcripts and analytics of #hpm chats through @Symplur.
Image credit: Vermont Hogback Mountain via Wikimedia (CC license)
Monday, August 24, 2015 by Pallimed Editor ·
Friday, August 21, 2015
Hospice and palliative care professionals value honesty. We may be the only people in a patient’s life who speak openly about death and dying. There is no time left for us to speak metaphorically. We do our best to be compassionate when we are direct with our communication. In order to provide the best care possible for our patients, we have to build an open and trusting relationship with them. One might assume that since we are authentic with our patients, they are open and honest with us. We know, though, that this is not always the case. Recently, I wrote about the secrets of hospice patients. This article is a continuation of that thought with a discussion of the lies that hospice patients might tell us.
Before we go on, let's be clear that there is no moral high ground in the suggestion that hospice patients may lie. A lie, according to Webster's Dictionary, is simply "an intentionally false statement." It is my assertion that there are times where patients do make false statements to us, and they have their reasons for not being truthful.
If you are new to hospice and palliative care, you might be surprised to learn that patients might lie. If you have worked in hospice and palliative care for a few years, chances are you are nodding your head as you are reading this, with a recollection of your own patient encounters. I have been thinking about this phenomenon for a few years. As always, my articles are inspired by experiences and lessons I have learned as a hospice social worker.
Why do hospice and palliative care patients lie to us?Perhaps the best way to answer the “why” is to reframe the question. When might hospice and palliative care patients lie? Patients might lie when they do not feel comfortable with telling us the truth. We have not built up trust so that the patient feels we are on their side. Patients may outright lie or they may lie by omission or understate the truth.
Here are some examples of areas of deception:
Current “bad” habitsThere are several reasons why a patient may not be honest to a hospice caregiver about their smoking, drinking or drug habit.
1. Patients expect that their medical provider will tell them to stop what they are doing.
2. There is a fear of judgement/labeling by the medical provider.
3. Patients may not think their habit is the provider’s business.
4. A patient is ashamed or embarrassed by the habit.
5. There may be a perception that a truthful answer will result in an unwanted response from the provider.
Patients are not going to naturally understand why we ask questions about smoking, alcohol and drugs. We ask these questions because these habits can affect their plan of care. All three habits can affect how a patient responds to or metabolizes medication. If a patient is a smoker, we want to ensure that they are safe with their habit, especially if they are on oxygen. Before we ask questions about these habits, it would be helpful for the patient to know why we are asking. If we tell them why we need to know about their habits, we have a better chance of getting an honest answer.
Assessment/visit fatigueIn hospice and palliative care, we are constantly assessing. Every staff member that interacts with the patient is asking the patient questions. At times, the patient gets the same question from different staff members. A barrage of questions can be overwhelming for patients. We need to be mindful of the timing of our visits so that patients have a break in between providers as much as possible.
I had one initial assessment with a patient (Mr. J) which directly followed personal care by the aide and the hospice nurse visit. (Hospice social workers are tasked with conducting an initial assessment within five days, and so our timing can be unfortunate at times.) The patient I was assessing was irritated with his shower because movement hurt and he was in a bad mood when I started talking with him. I could not get a straight, honest answer on any question. He told me he had ten children, when in fact he had none. He refused to tell me what he did for a living. Every other word he said was a swear word. He was not in the mood to talk, and eventually, I gave up trying to win him over and gave him the space that he apparently wanted.
What they really think of us and/or our care
Why am I bringing this up? Because we need to remember that a patient is not always going to tell us directly when they are unhappy about something. Occasionally, one staff member will hear from a patient about their dissatisfaction with another staff member, but I suspect there is more dissatisfaction than we realize. A complaint-free patient does not mean we have a content patient. We need to check in with the patient frequently, and give them the opportunity to direct their care. We do not want to have a situation where a patient is very unhappy and we did not know because they didn’t tell us and we didn’t see it. We need to read body language and we need to read between the lines with what patients say and what they don’t say.
How to build a trusting relationshipHow does one build a trusting relationship with a hospice and palliative care patient so they feel comfortable telling the truth? This would be a great question for the #hpm tweetchat, as I am sure that there are lots of ideas. I do not claim to have all the answers, though I have often been told by patients that I am “authentic.”
Here is what I try to do:
• Ask permission for everything. Are you open to chatting? Do you mind if I take notes?
• Acknowledge the personal nature of questions. The reason I am asking is because…
• Take “no” for an answer. If a patient does not want a visit, I leave.
• Ask for permission to return.
• Be mindful of my nonverbal and verbal responses when a patient self-discloses.
• Normalize patient behavior and thoughts as much as possible.
Please do share in the comments your own best practices for building a trusting relationship for patients.
Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW
Image credit: No lies, truth - via iStock
Image credit: Building Trust in Health Care - composite by Christian Sinclair for Pallimed
Friday, August 21, 2015 by Lizzy Miles ·
Monday, August 10, 2015
by Jordan Keen
SM is a 25-year-old female with progressively worsening rhabdomyosarcoma despite multiple rounds of chemotherapy and surgery. She presented to the emergency department with worsening of her chronic tumor-related abdominal pain and new, diffuse pain of the muscles and joints. Family reported she had been experiencing episodes of confusion and hallucinations over the past week. Her home pain regimen of long-acting morphine and as needed oxycodone had been titrated aggressively over the past month in an attempt to control her pain (600mg total daily oral morphine equivalents).
When first evaluated by the palliative care consult service, she was in severe distress. She described severe, 10/10, diffuse pain. On exam there was generalized tenderness of the abdomen, as well as her shoulders, upper legs, and lower back. She was exhibiting myoclonic jerks of her upper extremities every 3-4 seconds. Although she was alert and oriented, she was easily distracted during the exam and required frequent redirection.
Our palliative care team was concerned about opioid-induced hyperalgesia (OIH). Suspicion was high given the paradoxical worsening of her pain despite high doses of opioids and the neuroexcitatory signs and symptoms (myoclonus, confusion, and hallucinations) she was exhibiting. Therefore, it was decided to lower the overall dosage and switch her opioid regimen in an attempt to reverse OIH. Her long-acting morphine was discontinued and replaced with methadone 5mg three times per day. Her as-needed oxycodone dose was reduced from 30mg to 5mg every 4 hours. To control the myoclonus, low dose lorazepam was administered three times per day.
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Opioid-induced hyperalgesia (OIH) is a rare syndrome of increasing pain, often accompanied by neuroexcitatory effects, in the setting of increasing opioid therapy. Clinicians should consider OIH in patients on high dose opioids or during a period of rapid opioid escalation. While case reports show a wide range of dosages can provoke this syndrome, the majority of patients are on very high doses, often greater than 1000mg oral morphine equivalents per day and typically via parenteral routes (IV and intrathecal). Morphine is by far the most common opiate implicated in OIH. Hydromorphone and oxycodone, members of the same class of opiate as morphine (phenanthrenes), can also cause OIH, but oxymorphone has not yet been reported to cause it. Methadone, a synthetic opioid in the class of diphenylheptanes, and fentanyl, a synthetic opioid in the class of phenylpiperidine, are considered less likely to precipitate OIH.
Existing data suggests that OIH is caused by multiple opioid-induced changes to the central nervous system including:
- Activation of N-methyl-D-aspartate (NMDA) receptors
- Inhibition of the glutamate transporter system
- Increased levels of the pro-nociceptive peptides within the dorsal root ganglia
- Activation of descending pain facilitation from the rostral ventromedial medulla
- Neuroexcitatory effects provoked by metabolites of morphine and hydromorphone
OIH can be confused with tolerance as in both cases patients report increased pain on opioids. The two conditions can be differentiated based on the patient’s response to opioids. In tolerance, the patient’s pain will improve with dose escalation. In OIH, pain will worsen with opioid administration. This paradoxical effect is one of the hallmarks of the syndrome. On physical exam, patients are grimacing in pain with moderate-to-severe distress, myoclonus, altered mental status or delirium and often allodynia (pain due to non-painful stimuli, such as light touch).
Typically, if you suspect OIH, you should get a pain or palliative care consultation because it will seem wrong to decrease opiates in a patient in severe pain. Opiate dose reduction and rotation to a synthetic opioid such as fentanyl or methadone is recommended. Methadone has the additional benefit of NMDA antagonism. It is not surprising that methadone has been shown to improve or resolve OIH given the role NMDA activation plays in causing OIH. Adjuvant therapies, such as acetaminophen or neuropathic pain medications, should be considered as they may decrease the need for opioids. Benzodiazepines may be a temporary addition to manage myoclonus as the OIH resolves.
Symptoms of OIH do resolve when patients are treated with the above strategies. However, it can be long and difficult to wean some patients to a low enough level of opioids to stop OIH. Existing literature does not address any long-term consequences of OIH. We hope to see more research on this subject.
Over the next 48 hours in the hospital, her myoclonus improved. Her pain and mental status improved more slowly. It took a week to re-establish control of her pain. At the time of discharge, she rated her pain as 3/10. Her new pain regimen consisted of methadone 10mg three times a day and oxycodone 5mg every 4 hours as needed.
1. Chu, L. Opioid-induced Hyperalgesia in Humans: Molecular Mechanisms and Clinical Considerations. The Clinical Journal of Pain Issue: Volume 24(6), pp 479-496. 2008.
2. Smith, M. Neuroexcitatory Effects Of Morphine And Hydromorphone: Evidence Implicating The 3-GlucuronideMetabolites. Clinical and Experimental Pharmacology and Physiology, 27, pp 524–528. doi: 10.1046/j.1440-1681.2000.03290. 2000.
3. Mao, J. Opioid-induced abnormal pain sensitivity. Current Pain and Headache Reports. Volume 10, Issue 1, pp 67-70. 2006
4. Lee, M et al. A Comprehensive Review of Opioid-Induced Hyperalgesia. Pain Physician 2011; 14:145-161. ISSN 1533- 3159. Open Access PDF
Case Conferences Editor - Christian Sinclair, MD
Photo Credit: Dunn Harvárr Valley by Asbooth2011 via Wikimedia Commons
Monday, August 10, 2015 by Pallimed Editor ·
Monday, August 3, 2015
“… in the movie, sadness saved all their lives.”
I heard these words from a 9-year old at the end of an NPR story on Pixar’s new film Inside Out. (Note: that the audio has more than the webpage written content.) I thought to myself: There is a movie explicitly about emotions? About the importance of what so many deem to be “negative” emotions? What?! I need to see this movie. How can this movie be used within palliative care?
Such sentiments were supported further as I read stories from parents who wrote about the impact watching Inside Out had on their families. One writer notes, Inside Out is a movie in which you see the “beauty and bittersweetness of grief… Deep within the theme of this movie is also the impact that tragedy has on our past memories.”
With these reviews in mind, our palliative care team went to see the movie together recently. The movie lived up to the expectations set for me. I can imagine using the “characters” (emotions) to help explain the mixed feelings encountered in the word of palliative care.
I’m also still smiling at the scene in which Sadness sits down and listens to the life review of an imaginary friend named Bing Bong… She doesn't say much at all, but afterwards he is amazed about how much better he feels. Palliative care anyone?
Jenni Linebarger, MD, MPH, FAAP is a pediatric palliative care physician at Children's Mercy Hospital in Kansas City, MO.
Image credit: Found via Idle Hands
Monday, August 3, 2015 by Jenni Linebarger ·