Archive for February, 2011
Creative methods in Storyteaching, by Karen Bell, RN, Nancy Boutin, MD
Storyteaching is storytelling with a twist. Both are learned skills, as was aptly demonstrated by two gifted storytellers/teachers. There is one essential and several important structural hints, but the essential issue is setting; that is, a safe place where stories of immense personal importance can be told without time constraints and in a language familiar to the listeners. That means the storyteachers must take the time to know the patient/family life stories and use analogies and language from those stories to which they can readily relate. (Because “time” is an issue here, much of the hour was spent justifying storyteaching as an essential therapeutic intervention.)
Another important skill is the ability to tell the story with lots of holes in it. They call this “interpretative space”. If it’s a story patients/families can relate to, they will fill the holes with their own stuff, so that it indeed becomes their own and has much greater impact.
We were encouraged to develop a set of story templates dealing with difficult themes we encounter each day (e.g., CPR/DNR, AHN, the “When?” question, the use of opioids, etc.). The slides have many tips about this, are exceptional, and will be on the AAHPM website.
Wow! A day and a half to get home. Who knew there would be snow in Minnesota in the winter? I hope you find yourself as reinvigorated by the Assembly as I have been.
So what were the other key articles? Well, perhaps you’ve seen Lyle Fettig’s excellent post at PalliMed complete with hyperlinks. If not, here’s Part II:
What is the experience that children undergo when treated with Stem cell transplant (SCT) for malignancy? Parents and Physician’s perspectives are presented in Ullrich CK, Dussel V, Hilden JM, Sheaffer JW, Lehmann L, Wolfe J Blood 2010 115: 3879-85. While success rates are improving, 5-year survival for children undergoing SCT is 50-60%. Physicians and parents of children who underwent SCT as the last mode of cancer-directed therapy reported knowing that the treatment will not result in cure less often and later than those of children who do not undergo SCT. This was associated with more use of life-sustaining treatments, less planning, and increased symptom burden for the children.
And for those with Dementia, the impact of pneumonia is described in Givens JL, Jones RN, Shaffer ML, Kiely DK, Mitchell SL Archives of Internal Medicine 2010 170: 1102-7. This study can be used to help surrogates decide whether or not to initiate antibiotics in severely demented patients in LTC. Residents in 22 Boston area nursing homes were studied.
Although it was painful to get up so early on the final day of the AAHPM Assembly in Vancouver, it was completely worthwhile to attend the meeting of the Pediatrics Special Interest Group (SIG). Over the years that I’ve attended this meeting, it’s been amazing to watch the evolution of interest and attendance in our SIG, and the parallel explosion of pediatric education, research and advocacy opportunities.
In 2007, our statewide pediatric palliative care (PPC) network OPPEN (Ohio Pediatric Palliative and End-of-life care Network) organized a national conference as a follow-up to the National Hospice and Palliative Care Organization’s (NHPCO) pediatric conference in Dearborn, Michigan in 2004. These efforts were organized precisely because there was no place for PPC providers to go to find educational and research information and to network with colleagues; most national conferences had only occasional, if any, pediatric content. Fortunately, that has certainly changed!
For the past few years, the AAHPM has offered greatly increased pediatric content at the Assembly, with pediatric sessions in almost every concurrent slot, as well as large numbers of pediatric paper presentations (which are often award winners). Pediatric representation exists throughout the organization, from workgroups and committees through the Board of Directors.
Similarly, NHPCO has been offering a pediatric track at its Clinical Team Conference for several years now, and its advisory group ChiPPS (Children’s Project on Palliative and Hospice Services) has expanded, undergone strategic planning, and taken on a leadership role in equipping hospice and palliative care organizations to care for children and in working closely with NHPCO in its advocacy and policy activities (www.nhpco.org/pediatrics).
The American Academy of Pediatrics (AAP) has also jumped on the PPC bandwagon, with the establishment of the Section on Hospice and Palliative Medicine. This group is focusing primarily on policy and educational activities, including opportunities for scholarly activity through the AAP’s main meeting, the National Conference Exhibition. The Section maintains 2 listservs that boast healthy discussion about many aspects of our field, 1 for members and 1 for any interested parties; Affiliate Membership is possible for non-physicians as well (www.aap.org; check out the web page soon for a more expanded discussion of each of these national opportunities for PPC involvement and commitment).
The Center to Advance Palliative Care has recently increased its pediatric focus too. Last fall, the annual conference included a pediatric track for the first time, and that will continue this year. Palliative Care Leadership Center tools and training for programs interested in starting or growing a PPC or hospice program have been available through a number of different sites for years; in 2008, 2 pediatric-specific sites were added (Akron Children’s Hospital and Children’s Hospitals and Clinics of Minneapolis) and a new pediatric curriculum was developed (www.capc.org).
And there are other groups involved with PPC as well. A few more highlights include:
- PEPPERCORN, the Pediatric Palliative Care Research Network, a dedicated group of researchers from a number of sites across North America who are working individually and collaboratively to advance the science of PPC
- The Hospice and Palliative Nurses Association (www.hpna.org), which has successfully developed a pediatric nursing certification examination in hospice and palliative care, and is also developing accompanying educational material
- The National Networks for Pediatric Palliative Care (www.network4pedspallcare.org), a grassroots effort focused on developing a web-based clearinghouse of programs and information for families and providers.
- The Pediatric Hospice and Palliative Medicine Competencies Project, a group of PPC leaders who have been working with the original HPM competencies document and authors to create a companion resource for pediatrics; importantly, the AAHPM’s Board of Directors approved support for this project at this year’s board meeting.
During this time, the Academy’s SIG has continued to meet and grow. In the last few years, we’ve become more organized, along with all SIGs in the Academy which are receiving more support through the new and expanded Communities model. We’ve developed an elections process, allowing a rotation of leadership and the opportunity for younger or newer folks in the field to become involved. This year’s Assembly featured a Pediatric SIG-sponsored session which was very well received. And there were a tremendous number of great suggestions for next year’s Assembly that were generated at the SIG meeting. Our next big push will be for a pediatric plenary!
In short, it’s a great time to be in pediatric hospice and palliative care. Seeing colleagues, learning about many new avenues to become involved in the field, talking about challenging and uplifting situations, sharing wisdom and lessons learned, and literally catching the contagious excitement among us were just a few of the reasons to get out of bed on Saturday morning for the SIG meeting. Hope to see you there next year in Denver!
The last day of the Annual Assembly is bittersweet as things come to a close, but it also means it is time for one of the highlights of the meeting year after year,the State of the Science. If you missed it, make a point to see the next one! Drs. Nathan Goldstein and Wendy Anderson reviewed articles from 2010 with a systematic format and highlight the key articles from the year. They critique the methodologies and analyze the results to help decide how the articles should be applied to every day practice.
This last year has been an amazing year. The number of high quality studies is higher each year, and they are showing up not only in high quality journals, but also in the media where they may impact the public. The research is demonstrating the value of the work we do and directing the care of the future.
Not surprisingly, things began with Temel’s trial of early palliative care for non-small cell lung cancer NSCLC (N Engl J Med 2010 363:733-42) The clinical bottom-line is that early palliative care integrated with standard oncologic care for patients with metastatic NSCLC is associated with improved QOL, mood, less use of aggressive therapies at the end-of-life, and longer survival, but they caution that we don’t know precisely why, and that this study was done in a mature program and limited to NSCLC.
Next, they reviewed Dr. Amy Abernathy’s RCT of oxygen vs. compressed air in patients with a prognosis >1 mo who have normal oxygen saturations (Lancet 2010 376: 784-93) As compared to compressed room air, oxygen therapy delivered by nasal cannula provides no additional symptomatic benefit for relief of refractory dyspnoea in patients with life limiting illness. Questions remain though about whether room air will be acceptable to patients and family, and whether a fan is a preferable alternative.
Dr. Unroe’s analysis of 1 year outcomes after prolonged ventilation at Duke may be useful to help patients and families with decision-making. Ann Intern Med 2010 153:167-75 Patients who received prolonged mechanical ventilation had high rates of mortality and functional dependence at hospital discharge. Between hospital discharge, 3-months, and 1-year, improvement in functional status was rare, high mortality persisted, and quality of life was poor.
The factors that influence surrogates understandings of prognosis was analyzed by Dr. EA Boyde in Crit Care Med 2010 38:1270-5 and can help us with a conceptual model of communication. Surrogates integrate information from a number or sources when estimating a patient’s prognosis, including providers, their knowledge and observations of the patient, intuition, and faith, and support of loved ones.
Curious what other articles were reviewed????
Stay tuned for Part II after the plane lands.
“Where there is love of humanity, there is love of the art.”
This quote from Dr. Moller’s talk really resonated with me as a relatively recent graduate of medical school.
In a thought-provoking exploration of impoverished patients struggles in the healthcare system at the end of life, an underlying theme was the importance of exposing training physicians to life as a poor and terminally ill patient. Nowadays, every medical school has managed to carve into an ever expanding curriculum a course on the “human side” of being a doctor; how to assemble body parts and physiologic processes into caring for a real live human being. Despite many strong programs, I suspect the vast majority of medical students leave school without the tools needed to truly care for the patients they will encounter in residency.
Exposing medical students and residents to palliative care in all settings and across all socioeconomic lines will only help to strengthen patient care.
Starting with Dr. Kehrle this started as a research project during training. Case 1 63 yo male sent to radiology for test and became agitated. He was confrontational with staff. He had been a Vietnam Veteran and shared that he had flashbacks when placed on the table for test. He also shared that he was a POW and could not stand to be flat on his back due to pain.
Overview:PTSD, Treatment options, signs and symptoms with special needs of Vets.
PTSD first reports published in 600bc diagnosis of exhaustion in 1800’s, WWII 10% of mobilized men hospitalized between 1942-45. Civil War diagnosis of shell shocked and railway spine. How common is PTSD? 50-90% of people encounter trauma world wide. Lifetime prevalence for Vietnam is 27% female and 35% male.
PTSD classified in DSM 4 as anxiety disorder, develops in some people after extreme trauma. Re-live the event, avoid anything that reminds them of it. Diagnosis is made when all criteria are met in DSM. 6 total expose to trauma, re-experiencing event, persistent avoidance and emotional numbing, Persistant arousal, duration >1month, significant impairment.
Avoidance and numbing: avoid stimuli of trauma, places, behaviors, people that lead to distress. decreased involvement in life activities.
Primary Care PTSD screening: How do we find them before it happens? 4 item screen with yes no answers: do you have nightmares, try hard not to think about it or went out of way to avoid, are consistently on guard, felt numb.
Neuroanatomy: Hippocampus gets stimulated and then awakens with memories, Left amygdala is also involved with feeling at time of trauma.
Neuroendocxrinology: studies have shown decrease levels of glucocorticoid levels with up reg of receptors. Increase central norepinephrine and down reg of receptors. Plasma cortisol levels have been correlated with PTSD, so lower cortisol and PTSD is worse. enhanced HPA axis with negative feedback.
Genetics: increased risk in identical twins, but studies were very small in number.
If you know a vet in crisis 1-800-273-TALK
Treatment options: long term treatment is needed, combined medication and psychotherapy is best, early treatment is better. Psychotherapy is difficult in hospice with vets due to lack of experience with PTSD. Identify mental heatlh professionals with experience to help. Contact VA for help will post how later.
CBT: most well researched approach, gradual reexposure to memories and replace them with healthier thoughts
Stress Management: Cognitive and behavior components, breathing control and relaxation, positive self talk.
Eye Movement desensitization and reprocessing (EMDR) can reduce symptoms in PTSD
VA use CBT and EMDR as first line treatments.
Is PTSD preventable? Pharmacological, Alpha-adrenergic agonist, Bets Blockers, Glucocorticoids, Opiates. These have all been studied in different settings with some results. Vets who received morphine just after event suffered less PTSD.
SSRI’s are most studied class and considered first line with strong evidence for use. SNRI’s have not been studied. Only paroxetine and sertraline have been FDA approved.
TCA’s they decrease flashbacks and nightmares. Generally less tolerated than SSRI’s so not used as first line.
Antipsychotics: possible benefit as adjunct in chronic PTSD. Current large multi-site trial with resperidone. None are approved currently.
Anticonvulsants: effective in restoring emotional stability but none are FDA approved for PTSD.
Benzo’s only 1 study comparing alprazolam with placebo showed small benefit but no evidence they are useful in PTSD and they may be contraindicated in use with CBT.
Future research, NMDA receptor antagonist proposed as possible treatment for distress and depression. Neuropeptide Y signaling may be reduced in PTSD subjects.
2008 20% of vets diagnosed with PTSD from middle east conflicts.
Now back to case study. Patient had suspicious behavior, anxious, nervous and triggered by memories. Could it be delirium? PTSD and dying where the threat to life may mimic original trauma. This can be triggered by life review and lead to poor communication between patient and provider. 1 small study found that 17% of patients treated at VA at end-of-life had PTSD.
1 out of 4 dying Americans are veterans. Currently 23.4 mil Veterans with 5.5 million receiving care at the VA. Must ask to get information because they are there. Veterans are reluctant to disclose PTSD symptoms due to fear and stigmatization. Look for anxiety, substance abuse, avoidance, and attempts to distract with work or activity. Consider using Military History Checklist, “Are you a Veteran?”, provide them opportunity to tell their stories, and THANK THEM FOR THEIR SERVICE! (We live free because they served)
Consider bringing another veteran with you when caring for a Veteran. Try to avoid loud noises, restraints, confining positions, and movies/TV showing war scenes. Goals of care should be to reduce PTSD symptoms.
Family members of patients with PTSD reported overall less satisfaction with care of loved one.
www.ncptsd.va.gov www.va.gov www.ptsdalliance.org all good resources to look at.
I wish that this information had been better known in past as my grandfather had PTSD from serving in WWII but it was not well understood. I only learned long after he died that he served and was wounded in WWII. Great talk and advocacy for Veterans and recognizing PTSD earlier to help them as they die. Without screening for PTSD we will not find it and the Veterans may suffer.
What a wonderful way to celebrate and remember all of us who care for our patients. The theme brought us back to Mother Earth as we are in the beautiful setting of Vancouver where we all are here to support each other. The symbol of the tree was used in several ways from the tree created during the conference by those attending and remembering those dear to them and also on the front of the handout with the Arbutus Tree (Madrone) which holds the tile of most sacred to inhabitants of this coastal region. I think the tree even though it looks like they stand alone are actually connected in many ways. And so are we.
I especially enjoyed the celebration because of it’s emphasis on gratitude. I think in the hard days we face and the many challenges, many of them discussed during the conference, that we remember to return to ourselves and be grateful. To have gratitude as we complete our day for the work we are called to do. Grateful for the sun that warms us, the ground we walk on and the air we breath. To also cherish our heritage personally and united as presented by Gabe George and Carleen Thomas from the Tsleil-Waututh Nation meaning “People of the Inlet”.
Gabe shared with us the loss of his brother from HIV and how he learned that healing is best done through song. Carleen and Gabe shared many songs with us and the healing in the room could be felt.
Patrick Clary also shared with us his healing journey which has taken many years and started in his youth with his magpie.
In a unique experience, often we share our monetary offerings, but what we received was a gift made by Kelly Two Wolves (she was introduced to us in the earlier plenary session). The beads represented the North (Red), West (Black), South (White) and East (Yellow) and the representation of the colors of the human race. The beads were presented in a bracelet, circular, joined and never ending showing we are ALL connected (related). This reminded me of another practice I learned this year, The Medicine Wheel.
In closing we joined in the Aztec Prayer of Community.
Only for so short a while, O God,
You have loaned us to each other.
Because we take form
In your act of drawing us.
And we take life
In your painting us.
And we breathe
In your singing us.
But only for so short a while
Have you loaned us to each other.
Thank you for this wonderful experience.
Session by Lawrence Wolfe MD
Demon is failure to acknowledge that patient’s are suffering and dying and leads to Burnout, sec trauma, moral distress, hostility, and structured violence. Most of us view death as a horrible thing and we are often not available to those who are dying.
Story about demons and priest to overcome fear.
Wallace Stevens: Death is the mother of beauty
Mitch Alboms Tuesdays with Morrie
Lets Meet death in picture. Showing a picture of tomb of a child then telling story of mother asking for healing of child who died.
Bonds of ritual that help to help with grief. 23 psalm as an example of strength and beauty. Water is a precious commodity and that water is a depth symbol where we may find order from grief. What is shadow? The sun is still there but will the clouds pass? The mourner must walk through the shadow.
It is a complete mystery when we die. We see the symbols of angels and demons but what do we believe? Picture of the death of Mary shown and very moving. Aging is natural even though we do not believe it.
Picture of Socrates taking hemlock while surrounded by his students.
You only live twice, once when you are born and once when you face death. Death does not extinguish the light it is completing the dawn.
Now showing a series of images and art that is very moving. The Vigil no one is touching the person in the bed and all sitting around the room.
Freddy the Leaf story about a leaf growing, learning, purpose and reason for being, watching, transformation, differences. Everything dies after their journey. Everyone is afraid to die and we are all a part of life. What is the reason for being here? It is about the sun and the moon, the warmth and the cold. Freddy was the last leaf left on his tree and as he fell he saw the whole tree for the first time. Closed his eyes and feel asleep. He did not know that he would join the ground and start again.
Poem about leaves falling. Do we see something others do not in this work we do?
When a great whale dies it falls to the ocean floor and feeds life for centuries. Giving birth to new life forms.
Reading aloud the 9 contemplations: a weather report warning us of a storm. We must prepare now and not wait.
1. All will die sooner or later.
2. My life span is ever decreasing. Each breath brings us closer.
3. Death comes weather or not I am prepared.
4. My life span is not fixed. Death can come at any time.
5. Death has many causes.
6. My body is fragile and vulnerable. My life hangs by a single breath.
7. My material resources will be of no use to me at the time of my death.
8. My loved ones can not save me. They can not keep us from death.
9. My own body can not help me when death comes. It will be lost at the moment of my death.
Story: There is no Death light house and ship watching for her to come.
Plainsong: chosen by patients and families. My immortal great choice for reading the lyrics. Where can my baby be with pictures to accompany sound. Sorry, I will remember You, Go on, No More Tears in Heaven.
The music combined with the pictures, art and images was very powerful and moving. Many tears in the room and then a video of Evenescence to get our energy back up. Overall this session was wonderful and attended by many. I hope we continue to provide this type of education and presentation for our souls.
Diane Meier’s talk this morning was less a presentation than a call for action to the palliative care field. Dr. Meier spent a year working on capital hill and has continued to advocate for palliative care on a local and national level.
She began with a review of the Affordable Care Act and the challenges faced in our country given the current unsustainable spending on healthcare. More and more people are looking to the value equation: Value=Quality/Cost. The United States struggles to increase value and has been unable to accurately measure and increase quality, costs have continued to rise. As we debate how to cut costs it is critical that palliative care not be left out of the discussion.
Currently, most of the talk around bending the cost curve has been related to changing payment structures including the formation of Accountable Care Organizations (ACOs). High quality, well integrated palliative care is a critical piece the health care continuum, and we should be advocating that it is included in any discussion of ACOs.
Unfortunately, there are very few voices from the palliative care community “at the table” in Washington and so our concerns are often not addressed. Only a tiny portion of NIH funding (0.01%) is devoted to research in the field of palliative care which only leads to further misunderstanding of our views and mission.
So how can we make a difference? How can we make sure the palliative care is included in health care reform efforts going forward? Dr. Meier outlined several steps that we can take as a profession and as individuals.
- Language is important. We must be consistent in how we talk about what we do. Her suggestion: “Palliative care is about matching treatment to patient goals.” What do you think?
- Submit your organizations data to CAPC’s registry so that quality is measured and improved.
- email/call/write a letter to your congressperson. AAHPM has made it easy!
- Mark time off in your calendar to meet with your congressional representatives to discuss and lobby for palliative care.
Our elected officials want to hear from us and they take our views very seriously. As an movement we need to start speaking up or health care reform is going to pass us by.
Although I was faculty rather than participant, this workshop about horizontal and vertical violence (“Bullying”) was a learning experience for me. As the only physician on the panel I expected to be isolated, to feel like a concentration-camp guard at the Holocaust Museum; instead I was surprised at the number of physicians in the room, often, it seemed, with experience on both sides of the bullying divide.
While the literature suggests that nurse-on-nurse bullying is slightly more common in health care, that has not been my experience. Trained in an environment in which bullying was a norm, physicians have a tough time escaping from that practice. It was clear that this group of physicians was determined to heal, and that the others on the palliative care team were equally determined to travel on the same journey. Most of us experience bullying in our work, and the nursing studies which dominate the literature suggest this is a significant factor in leaving the profession.
Modern teaching theory suggests that adult learners do well with short doses of didactic material and much better with “showing” rather than “telling.” In the interest of “showing” we inserted an episode of “horizontal violence” into the didactic session as an unannounced role play, with one presenter harrassing another to the extent that the room became visibly tense and uncomfortable, while the undermined presenter grew more flustered, shaky, dropping her materials. We stopped almost immediately to debrief. One of the participants asked “what could we have done to stop this,” and we spent much of the rest of the meeting examining this question in parallel experiences of “real life.”
Reflective practices which teach us to move toward appropriate action in spite of our ever-present fears are the foundation of resistance to bullying. Gifted teacher Don Marks hleped us understand the effect of these practices, actually decreasing the activity and size of the amigdyla, the brain’s “fear center,” increasing the size of the insula, the compassion center.
Again, understanding that “showing” works better than “telling,” we demonstrated two practices, reflective writing and a meditation. Participants were enthusiastic, understanding how these practices could well move them to a place where they could better intervene in bullying episodes on behalf of themselves or others.
Patrick Clary, MD
New Hampshire Palliative Care Services