Cultural Issues

A Developing Countries Scholar’s Perspective on the 2011 Assembly

Attending the 2011 AAHPM &HPNA Annual Assembly in Vancouver February 16-19, 2011 was a wonderful experience for me. It would have been impossible without the support from AAHPM for physicians like me who are working in developing countries. I got the opportunity learn new clinical and scientific knowledge of palliative care by attending different sessions on different days including the preconference workshops. It was a good platform to know and to develop personal relationships with palliative care workers from Canada, USA and other parts of the world. I am already benefitting from this new relationship to improve palliative care in Nepal.

I am going to conduct a one-day Palliative Care Workshop for fellows of different departments March 25, 2011. I got the chance to meet Steven M. Radwany during Annual Assembly who is helping to conduct the palliative care workshop by supplying 60 copies of the Primer of Palliative Care 5th Edition with the help of different friends from AAHPM. I met Fraser Black & Robin Love from INCTR who are also helping me. I have already received “INCTR Palliative Care Handbook” from INCTR Head Office, Brussels, Belgium for the participants of this workshop. Frank Ferris from San Diego has shown different opportunities to improve my personal career and to develop palliative care in Nepal. The educational flash drive provided by Laura Davis is very useful to conduct my daily palliative care activities.

Besides I could see the beauty and development of Vancouver and feel the warm hospitality of the Canadian people.

Bishnudutta Paudel, MD

Dancing with Broken Bones (Feb. 16th)

“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.

Gratitude: Service of Rememberance and Celebration

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.

Building Bridges, Breaking Barriers…February 16 preconference

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

Every continent except Antarctica

Julie Bruno, Director of Education, AAHPM

I had the opportunity to represent AAHPM at the 18th International Congress of Palliative Care in Montreal in early October. This was my first time at this Congress and, with the help of AAHPM member and Congress attendee, Dr. Nancy Hutton, we talked with people practicing palliative care from every continent of the world except Antarctica at the opening reception. (Thank you, Nancy!) Many stopped by to learn about AAHPM and many were interested in our educational resources: The Primer of Palliative Care, Unipac QR, the Unipac Series, the newly released recording of the AAHPM Intensive Board Review Course and the upcoming Annual Assembly in Vancouver. It was interesting as a staff member to consider how AAHPM resources may serve a more international audience. I also appreciated greeting several AAHPM members who dropped by to say hello.

I would like to thank AAHPM President Dr. Sean Morrison for spending time staffing the AAHPM booth with me. Throughout the week, we talked with attendees about Board certification and on line resources – both the AAHPM website for professionals as well as the patient family website, palliativedoctors.org . The Congress was trilingual (Spanish, French and English). If we think we struggle with a clear definition of hospice and palliative care in the US, imagine the challenges at this international conference!

Two stories from my time at the conference are staying with me… Mr. Li Ka-shing has developed National Hospice Service Program in Mainland China through the Li Ka Shing Foundation (LKSF). They have 220 field staff, 31 hospice units and have served 94,212 patients as of August 2010. They target underprivileged patients and provide free home-based care with a key focus on pain relief. The LKSF foundation has donated a total of US$ 40M, 89% spent on medications. He concludes his story by saying that they are serving 1% of the people who are dying in China. (www.hospice.com.cn) That took my breath away!

The other story came from Susan Kristiniak from Abington Memorial in Philadelphia. She shared the story of attending the 2009 AAHPM and HPNA Annual Assembly in Austin along with some of her colleagues. They were so energized by the conference that they went home and developed a four-hour nursing in-service training with a goal of reducing unrelieved pain. Using hospital data, they were able to prioritize need and started with the post-surgical unit that included 77 nurses who were mandated to attend this training. The unit showed a significant reduction in pain scores. Based on the feedback from the nurses on that unit, the training has been refined and is being rolled out on the orthopedic unit. To learn more about this project, Susan welcomes emails at skristiniak@amh.org.

The International Congress happens every other year. It is worth the experience.

Quality and competency: Invisible members of the palliative care team, the Medical Interpreter

We spend a lot of time speaking of physician, nursing, social work, pharmacist expertise in palliative care. We often see and support formal training for volunteers. (www.volunteertrainingonline.com/hospice; www.hospicevolunteertraining.webs.com) We teach the importance of culturally competent care and use of interpreter services to enhance communication with patients and families of other cultures and with limited English. Studies have shown the miscommunication that occurs when interpreters are not used in medical encounters.

At the European Association of Communication in Healthcare (EACH) conference in Verona Italy the opening keynote speaker, Phyllis Butow, a psychologist and professor of psycho-oncology and medical communication, presented research that caused me pause and concern. Her research, conducted in Australia, demonstrated that our assumptions about accuracy of language transmitted to patients/families when interpreters are used may be flawed – especially when interpreters lack training in giving bad news, end-of-life care, etc.

Her interviews with interpreters also revealed that professional interviewers define their role as cultural (as well as language) interpreters. In doing so, “cancer” sometimes was described as “mass” or “tumor” according to her presentation. Interpreters expressed similar cultural biases and fear of giving bad news as many other healthcare professionals.

  • How often does this happen in North America, as it seems to in Australia?
  • How much training do medical interpreters in the US, Canada, and other countries receive in delivering bad news, end-of-life care, death and dying?

Mandating the presence of a medical interpreter may not be enough when it comes to improving cross-cultural and inter-language communication in palliative care scenarios: we need to include medical interpreters in our definition of interdisciplinary teams, provide them training (not just teach physicians and advance practice nurses how to work with interpreters) in giving bad news.

Palliative Care Grand Rounds 2.9

Welcome to the monthly edition of Palliative Care Grand Rounds the monthly review of the best of hospice and palliative care content from blogs. We started in February of 2009 and are almost done with our second full year. To see previous editions of Palliative Care Grand Rounds go the http://palliativecaregr.blogspot.com/.

Marten Creek Photo by Joan Robinson RN CHPN Seattle WA

This summer has been a exciting month for palliative care and hospice advocates. At the beginning of the month we were still taking in all the attention form Atul Gawande’s article in the New Yorker titled ‘Letting Go.‘ And then in the middle of August we had the ground breaking research published in the NEJM demonstrating early palliative care improves QOL, reduces depression and potentially can improve survival.

So I thought we could start with blog posts relating to those two big tent poles.

The Gawande Article

People were reflecting on the writing of Atul Gawande and I think there is a lot to learn from how he tells his stories. It may help in how you give a presentation or write articles or blog posts of your own. My favorite was a blog called ‘Not Exactly Rocket Science’, where blogger Ed Yong writes on ‘Deconstructing Gawande – why structure and narrative are important.’ Also check out Bob Wachter’s blog piece on Atul Gawande and the Art of Medical Writing. He writes:

In this month’s piece, Gawande continues to tackle the most important healthcare issues of our day. By doing this with such clarity and beauty, he makes us all a little smarter, wiser, and more sensitive. His writing is a gift.

Debra Bradley Ruder from the GrowthHouse blogs Goodbyes writes on the Gawande article as well.

The NEJM Study

Both Geripal (Alex Smith) and Pallimed (Lyle Fettig) jumped on the NEJM research quickly and provided really helpful insights into the research that you wouldn’t get just reading the New York Times or other media sources. Between these two posts there are currently over 35 comments! Several days later Drew Rosielle let the results marinate with him a bit and the result is a tasty dessert highlighting the implications for our field in his Pallimed post ‘You had me at improves HRQOL.’

Diane Meier jumped into blogging and wrote a good piece at the John Hartford Foundation blog, that was picked up my the (general medicine) Grand Rounds and got 2nd billing. Many other key blogs covered this as well including:

Other great bits

Each person faces cancer in his or her own way. There is nothing right or wrong about the different approaches people take. Denial or acceptance is not a statement about someone’s character. Having hope or not does not always come from an explicit decision to be hopeful; it often just happens one way or the other. Likewise, the spectrum from stoicism and strength to dependence and, yes, even weakness, are reactions that are unpredictable until you are actually faced with the disease. Too, how one feels can change over time — whether minute to minute, day to day, or year to year. So, one thing I have learned is not to be judgmental about how a person responds to cancer.

It is doubtful that a focus on reducing EOL spending per se will result in as much savings as is often assumed, for one simple reason: The concept of the last year of life is inherently retrospective. You do not know when the last year of someone’s life started until it ends. The stylized fact that leads to the assumption of wasteful EOL spending., i.e., 1 in 4 dollars spent on care in the last year of life, is based on an inherently retrospective concept that does not translate easily into the prospective decision-making that would be needed to reduce wasteful, futile or harmful spending in the last year of life.

And then I understood. I wasn’t crying for him. I was crying for me.

I cried because I couldn’t imagine a memorial service for me looking anything like the one for Rob. I cried because I couldn’t imagine that twenty people, let alone two hundred, would give up an evening to say nice things about me. I cried because I couldn’t imagine that my life, already a lot longer than Rob’s, would ever have that kind of meaning and impact. I understood then that my patient’s short life was telling me to live the rest of my own life better — to be warmer, and more open-hearted, and more loving.

people—actually mainly men—wished that they hadn’t worked so hard. They “deeply regretted spending so much of their lives on the treadmill of a work existence.” My wife would say that I work all the time, but I live a life where work and play are not easily distinguished. Is writing this work? It doesn’t feel like it to me. Tomorrow I’m off to give a talk at a science festival in the Austrian Alps. Is that work? The truth is that even in the most serious jobs I’ve always let the appealing (and often frivolous) come before the serious.

Some humor

Oscar the Cat - Photo by Stew Milne of AP.

So as you can see there are many people talking about the difficult things people don’t want to talk about. We are not alone in wanting to provide good quality care for patients and families facing with life-threatening illness. Sometimes with a little humor is a tough time, sometimes with fantastic insights into what it means to be alive. Go read and support the things that impact you with a comment, Facebook ‘like’ or email to a colleague.

Check out next month’s host the SWHPN blog called palliative-sw. They have a new look!

PCGR has subscription options; you can follow by email or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available.

A Member’s Perspective on the Geriatrics and Palliative Care Conference in Saudi Arabia

Saudi ARAMCO Medical Services Organization
May 24-26, 2010

I participated in a fascinating international medical conference at the Saudi ARAMCO hospital in Dhahran, Saudi Arabia. I was invited to speak on palliative care topics during a geriatric and palliative care conference by Dr. Richard Dupee, chief, Geriatrics Service, Tufts Medical Center. Dr. Charles Cefalu, a geriatrician at Louisiana State University joined us as a speaker.

During the conference we spoke about a number of typical geriatric topics including the management of behavioral problems in dementia, the evaluation and prevention of falls and urinary incontinence. In an overview of the concept of palliative care, I discussed the evaluation and treatment of delirium, talked about artificial nutrition and hydration and discussed techniques for difficult conversations among other topics. I found discussing many of these topics challenging given the vast cultural differences seen in the Arab world.

While I wasn’t lecturing I met with a number of physicians, nurses and hospital leaders and discussed hospice and palliative medicine concepts. The hospital is interested in establishing a palliative care service as well as a home health care service, but they face significant cultural barriers. For example the concept of “Do Not Resuscitate” is only very recent development in the hospital and the concept is still not widely endorsed by many physicians, patients or families. I got the impression most patients and families expect to have resuscitation attempts no matter the underlying disease process or prognosis.

When I discussed the lack of evidence of benefit for gastrostomy tubes in patients with advanced dementia, many in the audience voiced anecdotally based skepticism. It appeared to me that patients, families and physicians simply expect patients with advanced dementia will receive tube feedings. Additionally the physicians mentioned they are prohibited from prescribing strong opioids for non-malignant pain and methadone is not available in the country of Saudi Arabia.

Despite these challenges the staff is ready to proceed with developing a palliative care program and home health care. It will be interesting to see how the significant cultural challenges will impact the progress of their work, and I look forward to working with them in the future.