Showing posts with label international. Show all posts
Showing posts with label international. Show all posts
Friday, September 21, 2018
In about 2004, our program embarked on a regional pilot project to teach healthcare workers – doctors, nurses, social workers, chaplains, and others – to provide pediatric palliative care. Our region is the Upper Midwest: Minnesota, Iowa, Wisconsin, North and South Dakota. “Join pediatric palliative care,” we joked, “and see the world!!”
Little did we know.
From these first steps began a truly humbling and inspiring journey across many continents and into many communities.
Much of this started when a project I was involved with – Education in Palliative and End of Life Care for Pediatrics* (EPECPeds) – launched. The larger world was very interested in a flexible, curriculum to scale pediatric palliative care services. Groups from India, South America, the Pacific Rim, and an Isreali-Palestinian initiative among others invited us to teach and most importantly to train others to teach. When I travel I also look up palliative care friends I have met along the byways and see what their work is like. From these travels and workshops, relationships formed. Lively discussions erupted. What does pediatric palliative care look like in other countries? How has it evolved? What are the lessons learned to help, and ones to avoid?
Dr Chong Po Heng teaching about breathlessness at #EPECped pic.twitter.com/tSzk9UAQYa
— Stacy Remke (@StacyRemke) May 18, 2018
As a social worker, people usually ask me about mental health, psychosocial and bereavement support considerations. These are especially tough questions when one knows little of the cultural context, perceptions of, and approaches to mental health, or the resources available to address the needs. In India, the first question families are asked when a new diagnosis is made is “how much money do you have?” The second question is “what do you want the patient to know?” Collusion between the physician and the extended family about how much (if anything) to tell the patient, is common and expected. It is important to account for and adjust to these differences. But some things are universal. I was recently in Singapore, working with a pediatric palliative care team. On several home visits, I saw devoted families providing exquisite loving care.
International work can leave haunting memories too. In the aftermath of Hurricane Haiyan, in the Philippines, I volunteered near the community health center’s “intensive” care unit for the sickest patients. This small room with dirty green walls and sputtering florescent light held two narrow cots and a gurney, a large rusty O2 tank, and a cabinet. I observed a girl no older than 13 handbagging an elderly man lying on a gurney. In the other corner, an elderly person was huddled against the edge of a cot, hopefully sleeping. As I peeked into the room, the girl turned to me with an expression of great anxiety and distress. She did not break rhythm in her bagging task. I asked the physician about the scene, who explained that family members often must provide such care as no other resources exist. She expected this elderly cancer patient would die within a few days. I asked about discussing a do not resuscitate order or advanced care planning. She said no, that would happen with the oncologist at the regional cancer center…3 hours away. All I could hope for was that the grandfather wouldn’t die during this young girl’s shift at the bedside.
#EPECpeds getting underway this morning in Kuala Lumpur! Dr Ross Drake demonstrates interactive lecture. pic.twitter.com/LCFYKOEWl5
— Stacy Remke (@StacyRemke) May 18, 2018
These international adventures in palliative care can be enriching and maddening all at once and are likely to change us in ways we do not expect. For me, I no longer take for granted the tremendous resources and access people have here in developed countries. Routine illnesses here are life-threatening in other places. What then are the boundaries of palliative care? We apparently can’t take suitcases of morphine to places where supplies are restricted. (I asked!) What can we do then to improve a lot of those living with pain? As a start, make some friends. Go and visit them. Witness love, skill and dedication in action. Be humble. See what you can offer.
By the way, we never did crack North Dakota in our initial pilot effort, but other doors opened. Join the palliative care community and see the world, indeed!
*EPEC-Peds is an NCI funded curriculum and training initiative. PI: Stefan Friedrichsdorf, Joanne Wolfe, Co-I: Stacy Remke, Joshua Hauser
Stacy S. Remke, LICSW, ACHP-SW was a pediatric palliative care social worker for over 27 years and one of the founders of PPC at Children's Hospitals and Clinics of MN. She currently teaches graduate social work at the University of Minnesota, hoping to inspire the next gen palliative care social work community. She is also on the board of SWHPN. When not occupied with all things palliative Stacy can be found wrangling her 108 lb "puppy" Seamus.
Friday, September 21, 2018
Tuesday, February 2, 2016
A recent large study published in JAMA compared end-of-life practices for people with cancer in seven developed countries from 2010 to 2012: USA, Belgium, Canada, England, Germany, Norway and the Netherlands. The United States had the lowest proportion of in-hospital deaths and lowest number of days in the hospital in the last six months of life. Conversely, over 40% of patients who died from cancer were admitted to the intensive care unit (ICU) in the last 6 months of life (more than any other country in the study by a factor of two.) Something we have seen echoed in previous research.
Spending for end-of-life care in the hospital was high in the America but not as high as in Canada and Norway. It should be noted that in the figure shown that physician costs are not included in the US figure and therefore should be considered an underestimate.
Chemotherapy use was highest in Belgium followed by the US. The place of death seems to have shifted in the US away from the hospital as in the early 1980’s over 70% of patients with cancer died in the hospital and longer hospital stays were more common.
Besides all patients over 65 with any cancer, the researchers also looked at a targeted population of patients with lung cancer over age 65. The secondary analysis of this more similar group reinforced the patterns seen in the larger group with various cancer types.
Other commentary on this research can be found in the NY Times and Medscape. The article is not open access at this time.
Here are the topics:
T1: Are you surprised with the results of the study? If so, elaborate!
T2: How can the US centres reduce end of life hospitalisations and expense near end even further?
T3: What can other countries learn from the US practice? What can the US learn from the international community?
T4: Do you believe dying patients without cancer have similar outcomes?
What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 2/3/2015 - 9p ET/ 6p PT
Host: Dr. Ravi Mahraj Follow @ravipm2000
Follow @hpmchat for up to date info.
Image Credit: JAMA via fair use (education, critique). All rights reserved otherwise
If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org
Tuesday, February 2, 2016
Monday, October 20, 2014
Who doesn’t feel a wrenching in their heart? The Ebola virus, first recognized in 1978, killed less than 2000 people in its first 35 years and double that number in the past 10 months. According to the World Health Organization 416 health care workers have contracted Ebola and, at least, 233 have died. That is almost 6% of deaths.
As we all know a new, more widespread outbreak of Ebola had started. I began to read about the virus, the symptoms, the treatment, and the spread. And I recalled my month long work at a hospital in Zambia a few years ago where the TB isolation ward was anything but and supplies rarely arrived as planned.
A few weeks ago, I started thinking, “I could go help out”. For one of the first times, my skill set was needed. Gowning up and providing supportive care is what I do best. A palliative care doctor could do a lot more for a patient with Ebola than a trauma surgeon, an electrician or a body retrieval dog. And given the lack of infrastructure, soldiers are now being sent, including 150 from nearby Fort Campbell, to build hospitals and use their other non-combat skills.
I kept thinking I could go to West Africa with full understanding the risk was high I may not come back well, or even alive, because that is already happening to our palliative clinical peers. Miata Jambawai, a member of Sierra Leone’s Ebola Rapid Response Team writes, “Our doctors are dying. Our nurses are dying. Our lab technicians are dying and help does not come”. One of the doctors she referenced was Olivet Buck, a palliative care specialist, the 4th Sierra Leone doctor to die from the outbreak. William Pooley (link?), the first Briton known to have contracted Ebola is a palliative care nurse who selflessly volunteered to work in a Sierra Leone hospital where 15 other nurses had died. He was infected with Ebola and survived and today is starting work again to help others with Ebola in Freetown, Sierra Leone.
I could die and for the first time in my life, I was consciously ready to die. I am slightly past middle aged, my daughter is about to graduate college and very capable, my dog is old and won’t be around much longer. I have traveled all over and done pretty much anything I wanted to do. I was OK with the risks of going to Africa.
Trouble was, no one else agreed with me. No one else thought my life was worth the help I could give. When I told my daughter, she was aghast and dead set against it – she was so afraid of losing me, that I couldn’t bear it. My friends reacted similarly. Only my boyfriend encouraged me but he’s a different breed altogether and has a physicist’s perspective on risk.
I didn’t go, but this is what I learned. When a patient hears they have a terminal illness, they may be totally ready to die but if family is not ready – there is little they can do to change the outcome. At some point, of course, biology takes over and death ensues but until then, what a mish-mash of emotions.
If you have been in hospice and palliative care for any amount of time, you have likely seen the patient who is ready to die, but the family is not there emotionally yet. Imagine someone with ribs so skeletal there was no space to place a stethoscope and whose black gangrenous foot throbs below the covers. She says to you, "I hope it won't be too long, because I am ready." In response, her family nervous but cheerily quips, “You might outlive us all.” Hoping for a natural death but trying so hard to stay for others. I have never thought so intimately about this from the perspective of a patient. Mostly I think like a family member – I don’t want anyone around me to die.
This lesson may pale in comparison to the weightier dilemmas and challenges of Ebola but represents the one and only positive outcome I see from this tragic disease.
Ann Colbert grew up in Michigan, completed her residency in Rochester, NY in 1985, moved to Northeastern Kentucky to work as a Family Practitioner until shifting to full-time Palliative Care in 2003 - still in rural Kentucky. She is a multi-instrumentalist wannabe and enjoys many outdoor endeavors.
Image credit: CDC
Monday, October 20, 2014
Wednesday, October 8, 2014
World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world.
World Hospice and Palliative Care Day is organised by a committee of the Worldwide Palliative Care Alliance, a network of hospice and palliative care national and regional organisations that support the development of hospice and palliative care worldwide. The day is facilitated by Hospice UK, the national charity for hospices.
The aims of World Hospice and Palliative Care day are:
- To share our vision to increase the availability of hospice and palliative care throughout the world by creating opportunities to speak out about the issues
- To raise awareness and understanding of the needs – medical, social, practical, spiritual – of people living with a life limiting illness and their families
- To raise funds to support and develop hospice and palliative care services around the world
The theme for World Hospice and Palliative Care Day which will take place on October 11 is 'Achieving universal coverage of palliative care: Who cares? We do!'
We will be talking about World Hospice and Palliative Care Day this evening, Wednesday October 8 during the weekly #hpm chat on Twitter at 9p ET/6p PT. We hope you will come join us!
- Jim Cleary, MD - @jfclearywisc
Topics:
- Jim Cleary, MD - @jfclearywisc
Topics:
T1: How do you see the role of World #hospice and #
T2: Thoughts on the theme “Achieving universal coverage of palliative care! Who cares? We do” for 2014
T3: So what do you have planned for #world #Hospice and #
T4; What would you like to see more of or what opportunities do you see for world #Hospice and #
Dr. Jim Cleary is Associate Professor of Medicine, Medical Oncology Section; Director of Palliative Medicine at UW Hospital and Clinics and a strong advocate in voice and action for palliative care on the global stage. Occasionally he lives in Wisconsin, when he isn't traveling the world supporting world wide palliative care efforts. He is also the founder of the weekly #hpmglobal chat.
Dr. Jim Cleary is Associate Professor of Medicine, Medical Oncology Section; Director of Palliative Medicine at UW Hospital and Clinics and a strong advocate in voice and action for palliative care on the global stage. Occasionally he lives in Wisconsin, when he isn't traveling the world supporting world wide palliative care efforts. He is also the founder of the weekly #hpmglobal chat.
Wednesday, October 8, 2014
Friday, October 11, 2013
In the last few months, a few people have done a lot to help open my eyes to the importance of understanding palliative care through the eyes of the world. The efforts of Dr. Jim Cleary (@jfclearywisc) on Twitter (#hpmglobal) and leading the Pain and Policy Studies Group, in addition to Dr. Holly Yang (@hollyby) and Dr. Frank Ferris and their international work, have helped illuminate the challenges faced in other countries who are not as open when it comes to opioid access, or palliative care training.
So for World Hospice and Palliative Care Day tomorrow I encourage you to increase your awareness about global palliative care issues the whole year through. But since awareness is real only the first step, I would also ask that you sign The Prague Charter in an effort to make governments recognize palliative care as a human right. It is already sponsored by:
Background information on the charter can be found on the European Association for Palliative Care website. Basically it asks government to support access to medications, palliative care training, public health policies that support patient and families in times of serious illness and around death, and finally integration of palliative care into the healthcare system continuum.
Once you sign it, share it and when you share it, write why it is important to you. Here is what I added to my signature on The Prague Charter:
As a palliative care doctor, I have seen suffering damage people and families, but I have also seen the ability for skilled clinicians taught the basics of palliative care, who are able to relieve that suffering. In that act of relief, those clinicians also create a healing process for patients and families even in the face of serious illness. With access to critical pain and symptom medications and the proper education more clinicians can make a true difference in people's lives around the world.
Friday, October 11, 2013
Sunday, October 14, 2012
Happy World Hospice and Palliative Care Day everyone!
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| Photo via Abaconda (cc) via Flickr |
I just wanted to mark this day, October 13th, 2012, as events happened all over the world to recognize our field and bring attention to the patients and families we care for. Events occured internationally and in the United States.
On the international version of ehospice.com website, it reported that the WHO estimates that "24 million adults require palliative care at the end of life each year... Despite this growing need, 42% of countries still have no identified hospice and palliative care service, while 80% of people live in countries with little to no access to medication for the treatment of moderate to severe pain." There are so many patient who need us to advocate and care for them, so the events of today are exciting...
There was a run in Addis Abbaba, Ethiopia, a walkathon in Kerala, India, a human chain in Dhaka, Bangladesh, a flashmob in Cimislia, Moldova, a short film festival in Taipei, Taiwan, and many, many other concerts, celebrations, and workshops. There were also film screenings of the Life Before Death movie , which is something that is relative easy to do whereever you are, especially as they are discounting the DVD set 50% for the month of October.
I hope you had a good World Hospice and Palliative Care Day! Let's keep it going this month and all year round!
Sunday, October 14, 2012
Friday, February 3, 2012
World Cancer Day is February 4th, and in honor of this day, I'm posting about a critical issue we have written about on Pallimed before... access to medications. There are three developments in the last few days I think are worth knowing about...
Friday, February 3, 2012
Monday, July 25, 2011
Each week for 50 weeks, there will be a short documentary film about the international crisis in untreated pain. We've already made it through the first 10 weeks so far! This is a part of a larger project entitled LIFE Before Death which includes a full-length documentary film as well (see Christian’s earlier post Movie Trailer Premiere: LIFE Before Death).
Whether you are interested in watching about Opiophobia or debate the question of Torture in Health Care, you can catch up at TreatThePain.com. You can also download the videos for advocacy and training work at the Life Before Death website (the topic of two previous Pallimed posts here and here).
Monday, July 25, 2011
Thursday, April 14, 2011
I can't get enough of this month's Surgical Clinics of North America (April 2011). Thoughtfully presented, the entire issue creates a three dimensional view of palliative care in surgery.
Dedicated to Jack Zimmerman, MD, FACS, who helped establish one of the first hospices in the US while Chief of Surgery at Church Home and Hospital in the 1970s, Surgical Clinics of North America presents a well-rounded and well-thought through collection of papers on Updates in Palliative Surgery. Geoffrey Dunn's introduction outlines the successes of our field, while also honestly presenting the challenges to its growth - from the limited research funding to the heated political arena, even daring to use the term "death panel." He generously credits our field with as being "a timely lens through which the socioeconomic and spiritual bankruptcy of the current health care system [...]"
In addition to setting the stage of our field in general, the Clinics dares to delve into concepts of spirituality in surgical and palliative care, the importance of introspection for surgeons, the value of interdisciplinary collaboration, and bereavement in critical care. Overview of palliative medicine in critical care settings, the importance of early palliative care in oncology and in lung cancer.
I, for one, will add every article to my library. And Dr. Dunn - we'll stand by you in your challenge to your colleagues when you share, "the surgical world has too many seriously ill people in its care and too much to to offer the seriously ill with all its diagnoses to not assume a leadership role for the continued growth and development of palliative care."
Here is the Table of Contents (no article is open access, there are some free editorials):
Here is the Table of Contents (no article is open access, there are some free editorials):
Thursday, April 14, 2011
Monday, April 11, 2011
Sadly most of these programs are under-recognized and do not get the level of support needed for the scope of the problem. Sometimes you need to do something a little more confrontational to get the message across and a coalition of organizations have come together to produce, "LIFE before Death," a series of weekly shorts and eventually a feature length independent documentary to bring the international reach of suffering right to your home
Here are the two trailers released this evening (click here and here if the embedded videos do not appear)
Interestingly the Lien Foundation who also created the rich, bold, controversial, innovative, daring, absurd website Life Before Death is also supporting these films. You may remember I declared it the Best.Website.Ever. Also supporting these documentaries are the International Association for the Study of Pain, The Mayday Fund, the Union for International Cancer Control and The Institute for Palliative Medicine at San Diego Hospice International Programs.
So do you think this will get people's attention? I think it will increase awareness, but I wonder if it will polarize or change the views who are fearful of opioids and think access should be more restricted because of problems such as diversion? In fact I think this is a larger problem for hospice and palliative medicine advocates. We need to be able to partner with those who want to decrease diversion and abuse to come to shared solutions that meet the goals of increasing access to pain relief while decreasing harm from diversion and abuse of opioids.
So do you think this will get people's attention? I think it will increase awareness, but I wonder if it will polarize or change the views who are fearful of opioids and think access should be more restricted because of problems such as diversion? In fact I think this is a larger problem for hospice and palliative medicine advocates. We need to be able to partner with those who want to decrease diversion and abuse to come to shared solutions that meet the goals of increasing access to pain relief while decreasing harm from diversion and abuse of opioids.
The other big question from these trailers is the assertion that 'pain unrelieved is torture.' I am not sure of the origins of the quote. Is this a matter of hyperbole, fact, or somewhere in between? I think it has huge implications for how palliative care clinicians interact with our fellow professionals in pain control education for good and for bad.
Photo credit: Still from trailer for LIFE before Death.
Photo credit: Still from trailer for LIFE before Death.
Monday, April 11, 2011
Sunday, March 20, 2011
Japanese Communication Style: Comparing the Disclosure of a Nuclear Crisis to Disclosure of Cancer Diagnosis/Prognosis
A reporter for the New York Times recently made this statement (see video below):
"I think the Japanese tend to try to maintain a veneer of calm and not breech topics that might be alarming or insulting (emphasis added). For example, until recently, it was the norm for families not to tell a family member who had cancer (about the cancer) just to save suffering on the part of the family member and we see some of that mentality at play in some of the communications we have seen from Japanese officials who have refused to confirm what turns out now to be a very serious situation at the Fukushima Daiichi plant. They were very slow in acknowledging some of the dangers."
Sunday, March 20, 2011
Saturday, November 20, 2010
In the December 1st issue of Pediatric Blood and Cancer is an article that presents the validation of a prognostic tool in pediatric hospice care. The study was produced by a team from the Hospital A.C. Camargo, a large cancer center in São Paulo, Brazil. Their overall survival rate in the treatment of pediatric cancers is just over 75%, roughly on par with those in the United States at approximately 80%. At this institution, a nurse-led, multidisciplinary palliative care team was developed in 1999. Patients are referred to it when 3 pediatric oncologists reach a consensus that a particular patient has no chance for a cure.
Saturday, November 20, 2010
Thursday, October 28, 2010
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| Image from www.painpolicy.wisc.edu |
Let's face it, almost everyone wants to avoid the experience of severe pain personally and for their loved ones. The reality, as illustrated by the interactive DCAM (Drug Control and Access to Medicines) Consortium Opioid Consumption Map, is that most of humanity does not have that luxury.
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| Guess which color is > 10 mg morphine/capita Image from www.dcamconsortium.net |
Thursday, October 28, 2010
Monday, October 4, 2010
So says the editorial associated with a recent BMJ "Spotlight" series of review articles on palliative care in patients with diagnoses other than cancer. The series was financially supported by the British Heart Foundation.
The reviews are rather cursory but give a sense of the perspective on the other side of the pond. The major highlight is the announcement from the BMJ Group that they will begin publication of a new journal next April entitled BMJ Supportive and Palliative Care. Great to see! (Any comments on the journal name?)
Articles include:
Monday, October 4, 2010
Sunday, September 26, 2010
I thought I would post on what I hope will turn out to be an occasional series on sexuality here on Pallimed. We've covered sexuality some before. A post that leaps to mind is one by Christian in 2007 about the controversy that arose over a case where the staff at the world's first hospice designed specifically for young adults openly deliberated and decided to facilitate a 22-year-old patient's request to have sex before he died.
Sunday, September 26, 2010
Friday, July 30, 2010
[I would like to introduce a new contributor to Pallimed, Holly Yang, MD from San Diego Hospice and The Institute for Palliative Medicine. I have been courting Holly for a while to get her to blog for us, so I am glad to see her debut today! You can also find this web- and ocean-surfing doctor on Twitter by the handle @hollyby. As with all of our contributrs all posts are her own and not the opinion of her employers. Please welcome her with a few comments - Sinclair, ed. ]
As one of the comments on the Economist website said, “What the heck do they want to promote now – Death Tourism?” As much as I love traveling, I’m not packing my bags just yet. But, I will give you the low-down on the 39-page Quality of Death (QOD) report by the Economist Intelligence Unit and commissioned by the Lien Foundation, which ranks end-of-life care across 40 countries. Go get your travel kit ready... here we go!
Friday, July 30, 2010
Thursday, July 15, 2010
(See the previous post for info on the Life Before Death site and outreach campaign)
The Lien Foundation and Singapore Hospice Council have released the first international Quality of Death Index. Even the name of the report is pretty interesting. I wonder how long they took deliberating about the name. obviously a play on Quality of Life, but POW! 'death' right there in the name, not 'end of life' or some euphemism. But that underscores one of the main goals of decreasing the taboo about dying and increasing the conversation. For the index they ranked 40 countries along the following areas:
- basic end-of-life healthcare environment
- availability of end-of-life care
- cost of end-of-life care
- quality of that care
Thursday, July 15, 2010
Finding humor in death and dying is probably an even more taboo subject than death itself, yet many who have worked with people near the end of life can probably recall numerous situations were laughter really was a dose of good medicine for all involved. Humor can be a great way to break tension, yet still speak to some truths, however painful. For example, I recently saw this balloon in a patient's room (picture taken with permission of the family):
They shared that the patient got a big kick out of seeing this instead of the common yet false exhortation of 'Get well soon.' The balloon often took people by surprise when walking into the room, and that seemed to be the zinger the patient enjoyed to give.
Tuesday, March 30, 2010
Last summer I had the distinct pleasure of hosting three medical students from Tongji University Medical School, Shanghai for a month elective in palliative care. The three students voraciously absorbed information about tending to patients with life-limiting illness - including communicating difficult news, negotiating goals of care, basic and complex symptom management. We reflected on the differences in practice and in palliative care medical education between UMass and Tongji U in Shanghai.
They were frankly surprised by how commonly morphine was prescribed for severe cancer pain. In China, they shared with me, meperidine is the drug of choice. I was equally stunned by their response as they were to our prescribing practices, to say the least. I wondered how much this was their level of experience versus a more general practice in China. Not long after, Supportive Care in Cancer published an article reviewing just this issue.
Physicians (including internists, surgeons, breast cancer specialists, gynecologists, orthopedists) from four tertiary care hospitals in Changchun (Northern China) and Changsha (Southern China) were surveyed, and the 201 of the 210 selected responded (97.5% response rate). The questionnaire evaluated 3 general categories:
- Knowledge of WHO guidelines and preference with drug choice for cancer pain management;
- Knowledge of cancer pain management and actual morphine utilization patterns;
- Physician perception of factors impeding use of morphine in clinical practice.
A brief overview of the results: Close to 50% of physicians had comprehensive understanding of the WHO guidelines. The drug of choice for severe cancer pain was meperidine (pethidine). Only 33.8% understood basic principles of opioid dosing (such as the lack of a maximal dose of morphine - despite China's State Food & Drug Administration officially supporting this fact since 2000), and this knowledge gap did not correlate with experience level of the physician, but rather with whether physicians had received specific training on opioids. The principle barriers to prescribing morphine included lack of training in cancer pain management, fear of addiction or diversion, and personal preference. Certainly, China's government has been on the forefront of supporting WHO initiatives in this arena and has one of the highest world-wide levels of access of opioids for severe pain.
Since that time, I have reflected on this data with trainees from different countries, including Peru and Korea - similar perceptions arise by the physicians reflecting on practice standards in their home countries. Experiences by colleagues teaching around the world suggest similar knowledge gaps, and fortunately, like this study suggests: providing education on cancer pain management quickly changes knowledge and practice by clinicians who have access to morphine and other opioids.
I applaud the efforts by Open Society Institute, Institute for Palliative Medicine, Institute Catalan de Oncologia (a palliative medicine WHO demonstration site), and the International Association for Hospice and Palliative Care in increasing expertise in pain management and palliative care across the globe. These groups have lead educational and consulting sessions in host countries, funded and invited physician leaders from across the globe to study with Palliative Care experts and take their knowledge home. Young physicians and medical students interested in International Medicine may want to consider HPM as a specialty because of the opportunity for international collaboration. Holly Yang MD - a good friend, excellent teacher, and Midwesterner-turned-California-surfer - is a great example of the upcoming Palliative Care physicians (HPM-LEAD participant) delving into international medicine by teaching international fellows at San Diego Hospice and traveling across the Globe to "spread the knowledge" of this field, promising to continue and to expand upon the work of current leaders in this field like Frank Ferris MD and Kathy Foley MD.
I will be traveling to Shanghai this spring, and look forwards to sharing what I've learned from our Chinese colleagues upon my return.
Yanjun, S., Changli, W., Ling, W., Woo, J., Sabrina, K., Chang, L., & Lei, Z. (2009). A survey on physician knowledge and attitudes towards clinical use of morphine for cancer pain treatment in China Supportive Care in Cancer DOI: 10.1007/s00520-009-0768-2
Tuesday, March 30, 2010
Wednesday, March 24, 2010
A couple of weeks ago I posted on the Archives of Pediatrics and Adolescent Medicine article “Considerations About Hastening Death Among Parents of Children Who Die of Cancer." That study and the study I’m writing about here are retrospective cross-sectional surveys of parents whose children died of cancer at least one year previously. Joanne Wolfe, MD, MPH of the Dana Farber Cancer Institute, Boston was on both research teams.
This study, "Symptoms and suffering at the end of life in children with cancer: an Australian perspective" was published in the Medical Journal of Australia in mid-January. The abstract is here.
In the study’s introduction, it was pointed out that previous international studies may not apply to the Australian milieu since compared to many other developed countries there are system limitations in access to experimental cancer treatments and fewer pediatric oncologists available, also Australia's population is dispersed over huge physical distances, which leads to the development of local and regional treatment centers.
Here are some data highlights:
- Offered out-of-hospital palliative care: 82%, 75% opted in. Satisfaction rating of very good or excellent for out-of-hospital palliative care: 74%
- 47% received cancer-directed therapy in the last month of life, with 33% experiencing significant side effects. The perceived goal of cancer-directed therapy was 33% palliation, 12% extending life, 12% ensuring everything had been done. Children who received cancer-directed therapy during the end-of-life period suffered from a greater number of symptoms than those who did not receive treatment (p = 0.03).
- 63% had time to plan death location, of these 89% preferred to have the child die at home, and of these all except two died in the planned location; 61% died at home. Of those children who died in-hospital, almost 25% died in an ICU. Life-sustaining treatments were pursued in only 8%.
- Descriptive statistics were presented about symptoms, suffering, treatment and treatment success. It was notable that there was a significant gap between symptom treatment and treatment success. Despite this, 83% reported the death of their child was somewhat or very peaceful.
In conclusion, the authors noted “relatively high rates of death at home and low rates of heroic medical interventions suggest a realistic approach to care of children with cancer at end of life. However, many Australian children who die of cancer suffer from unresolved symptoms. Greater care should be paid to palliative care for these children.”
Some thoughts
"Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body." ~ Elizabeth Stone
I think that taken together these two studies highlight the problems of under-treatment and late-treatment of symptoms in children with end-stage cancer, as well as importance of appropriate, anticipatory information for and communication with parents and caregivers. What caught my eye about these studies is that they were conducted and published at all, and upon further consideration, that they made it through the IRB process (having sat on one). I think that illness, suffering and death of children are psychologically white-hot. They touch upon our hopes, fears, guilt and shame, as health care professionals, and even more personally as family members ourselves, and as human beings.
I for one experienced the post-natal death of a sibling when I was seven-year-old; I rotated in the PICU, and routinely worked in a busy, urban children’s hospital emergency department; my young-adult son is training in the Army National Guard at this writing. The death of children, its memory, and the threat of death can loom very large indeed.
One appealing fantasy that may be afoot, which I know I can entertain, is that if we were just having EOL discussions earlier, and better prognoses where being made, and change of goals were initiated sooner, and these hospice -appropriate patients were enrolled in hospice earlier, then these kids and their families would suffer less. Certainly not very parsimonious, these are a lot of complex conditions. Even if we were able to smooth this terrible path some, and see greater and earlier enrollments into hospice, there is still the dying, the dying child and the child dying from cancer.
The expectation that we would be able to attain ideal symptom control if we were just given a fair shot, in a process as chaotic, dynamic and malignant as end-stage, pediatric cancer, is I think a fantasy. Alternatively there is doing one’s best by a patient, attending to the symptoms and the suffering in a context that is congruent and meaningful that is perhaps healing and even protective, especially for surviving parents, siblings, and other caregivers.
The Australian situation is different from other parts of the developed world as noted above. Perhaps an analogy might be drawn to the health care situation in rural and remote portions of the United States, where there are logistical barriers and cultural differences, and so the experience, meaning and memory may be different. That being said, even in the face of a yawning gap between symptom treatment and symptom treatment success, these parents were largely satisfied with the palliative care they received, and recalled the death of their child as being somewhat or very peaceful.
I think that there is a strong place for information, appropriate expectations, empowerment, good will, attention, professionalism and narrative to make a crucial difference in the experience of suffering, dying and grief, even, or especially in the case of children. That imperfect work is ours.
Heath JA, Clarke NE, Donath SM, McCarthy M, Anderson VA, & Wolfe J (2010). Symptoms and suffering at the end of life in children with cancer: an Australian perspective. The Medical journal of Australia, 192 (2), 71-5 PMID: 20078405
Wednesday, March 24, 2010
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