Public Librarians and End-of-Life Resources

In the spring of 2004, the Gulf Coast Partnership for End-of-Life Care (GCPEC), a Texas-based organization, received funding for a project that aimed to do the following:

• survey public libraries about their knowledge of end-of-life information resources;
• train public librarians on the effects of life-limiting illnesses and the impact on end-of-life decision making;
• provide online resources that provide information about end-of-life decision making;
• empower public librarians to educate individuals with life-limiting illnesses to become a partner with their health care provider in all aspects of their care, including end-of-life decision making (p. 24).
  

Part of the three-hour class that resulted was a pre-test and post-test to measure the level of confidence public librarians had with being able to assist patrons to find end-of-life resources. The level of confidence went from 25% at the beginning of class to nearly 80% at the finish of the class.

During the class librarians shared about their own experience in assisting patrons in this area, many expressing that health care providers had not adequately answered the questions these patrons had. In some situations, the librarians felt they were put in the position of "breaking the bad news." As was emphasized in the class, librarians should not be interpreting information, only providing it. They can offer their opinions about the resources, but should not give advice. While the librarians felt they benefited from the information provided in the class, they felt that a greater emphasis should have been put on conducting the reference interview and learning ways of interacting with patrons dealing with difficult health matters.

More information about the project can be found in the article:

Halsted, Deborah, Carolyn Harty, Teresa Petrucci-Coley and Rudy Ford. "Tapestry of Life: Training Public Librarians to Find End-of-Life Resources." Texas Library Journal 81, no. 1 (Spring 2005): 24-27.

Palliative Patients and Spiritual Distress: The Roles of Health Care Providers

Part III (of III)

The role of the doctor

Spiritual care starts with the doctor informing the patient that their illness is incurable. A terminal diagnosis is often the beginning of a spiritual awareness, as some studies have reported. In order that the patient not feel abandoned or hopelessness about a treatment’s failure, the doctor needs to be aware of the patient’s spiritual needs and perhaps continue to pursue treatment. At this stage in a patient’s illness, the language between doctor and patient changes, and, as Pronk states, “Much depends on the unhurried approach of the doctor and may require a change in mindset from that of result-oriented scientific thought and need for control” (p. 422). The emphasis is on the ability of the doctor to listen to the patient’s questions rather than being able to have all the answers. There is a need for both doctor and patient to allow themselves to be vulnerable in order to foster spiritual awareness.

Citing Peck, Pronk lists the five failures of unfulfilled spiritual care:

· Failure to listen

· Failure to encourage healthy spirituality

· Failure to combat unhealthy spirituality

· Failure to comprehend what is important to the patient

· Denigration of the patient’s humanity

(p. 422)

There is also the question of religion and how the word has different meanings for different people. It is important for the doctor to ask a patient what she or he means when they talk about religion in this context.

It is important to encourage the patient to tell her or his story, be it verbally, in writing or expressed through art. This can bring about a sense of completeness for the patient and allow for the patient to reconcile him or herself with their illness. Hearing and/or understanding the patient’s story can help the doctor understand how to address the patient’s spiritual needs. Pronk lists other forms of spiritual expression that might be supportive for the patient at this stage of life.

In conclusion, Pronk states, “it is important for the doctor to be aware of, and, if able, to respond to the need for spiritual care as an integral part of whole patient care. The relationship in spiritual care should be mutually vulnerable and mutually beneficial and, unlike other care the doctor provides, the pace and pattern of that relationship is ideally determined by the patient” (p. 424).

Pronk, Karen. "Role of the Doctor in Relieving Spiritual Distress at the End of Life." American Journal of Hospice & Palliative Medicine 22, no. 6 (November/December 2005): 419-425.

Palliative Patients and Spiritual Distress: The Roles of Health Care Providers

Part II (of III)

(The continuation of a discussion originally begun in this blog on October 14, 2006)

In her review article, “Role of the Doctor in Relieving Spiritual Distress at the End of Life,” Karen Pronk asks the question, “Should spiritual care be part of palliative care?” and cites a couple of studies that suggest yes it should. The evidence suggest that spiritual distress in a patient can have an impact on the patient’s outcome in the form of physical effects, while spiritual support could improve the outcome. “Pain, noncompliance with the care plan, guilt, and hopelessness have also been suggested as indicators of spiritual suffering,” Pronk states, “…showing that spiritual distress can be expressed in physical and psychological terms” (p. 420; citing Cobb). In order to provide comprehensive care, palliative care needs to be attuned and willing to address the spiritual needs of the dying patient.

According to Pronk, the training that healthcare workers receive is “lacking in both the language and the permission to talk about spiritual care issues” (p. 421). There is as well a number of discussions pertaining to the form that language should take, be it psychological, pastoral, secular or the ability to listen, acknowledge and understand. Of course, anyone can provide spiritual care—family, friends, hospice staff, nurses, and doctors— anyone who has the perception and sensitivity that the circumstances require.

To be continued …

Pronk, Karen. "Role of the Doctor in Relieving Spiritual Distress at the End of Life." American Journal of Hospice & Palliative Medicine 22, no. 6 (November/December 2005): 419-425.

Diagnosis by Google

As reported in the press,(CBC; Medical News Today) a recent study published in the British Medical Journal examined the effectiveness and accuracy of Google to diagnose difficult cases. Doctors at a hospital in Brisbane 'Googled' the symptoms of 26 difficult-to-diagnose cases drawn from cases published in the New England Journal of Medicine.

The doctors chose three to five search terms from each of the individual cases without knowing the diagnosis. They then selected the three most prominently displayed search results, and chose the one they felt was the most relevant and compared the diagnosis to those in the journal. The results from Google were accurate in 15 of the 26 cases, or 58% of the time.

The researchers of this study believe that search engines such as Google are useful tools in a world where medical information is expanding so rapidly. Doctors are unable to keep up to date with the changes. As represented in the press, the tone of the research team was one of satisfaction with Google's ability to provide them with correct diagnoses.

Obviously, doctors have the knowledge to properly evaluate the information that they retrieve from the Internet, however a 58% accuracy rate, in my opinion, is not encouraging. Perhaps there is more to this study than has been reported in the press, as there often is, but it seems rather unscientific and reckless to choose the three most prominently displayed results without evaluating the sources from which this information has been obtained. If this is indeed the case, this is the method they followed, hopefully no doctor in the real world would search in such a manner.

Remaking American Medicine: Hand in Hand

The fourth and final episode of this series, entitled Hand in Hand, looked at the innovate approach to patient care at the Medical College of Georgia's Children Medical Center (CMC), a teaching hospital, in Augusta, Georgia. Opened in December 1998, patient families were involved in the design of the CMC from its inception.

The stories of three families with chronically ill children underscore the importance for patient care to adapt, a realization that the status quo approach is no longer acceptable. With chronically ill children in need of ongoing special care, these families have spent many days and nights in hospitals and, unfortunately, been victims of medical errors. Three-and-a-half year old Colby Brown has had more than 50 operations and procedures in his short life. The Browns lost their first son to a surgical error and when Colby was born, Bridget Brown nearly lost her life because of a medication overdose. Even in the filming of this episode, a gastric feeding procedure was ordered that would have put Colby's life at risk.

Before the CMC was built, Julie Moretz began to ask questions about the way things were done and how patient families were treated. She too had spent many hours in hospitals with her son who had endured 12 heart-related surgeries. Julie Moretz has worked for the past 14 years to make the Medical College of Georgia a nationally recognized teaching hospital and health care provider. Prior to the transformation that has taken place, the College was considered one of the worst performing teaching hospitals in the United States. Now, representatives of other health care systems are coming to Augusta to see what they are doing that works. Julie eventually became director of Family Services Development, which recruits patients and families to become advisors to the hospital administration.

Some of the changes that make the CMC different are larger patient rooms that include pull-out beds for family members to use, the abolition of visiting hours so that families can be there whenever they want and, what is considered most unconventional, allowing parents to accompany their children into the operating room prior to anesthetization. The innovation that made the CMC a success was adopted when the College decided to build a new Neuroscience Center. Again, family members were involved in the design of the space and the same approach to patient care and family involvement has been adopted.

While this series has chronicled the many failings and shortcomings of the American medical system, it has also, as its title indicates, focused on the many individuals and health care systems attempting to 'remake' American medicine. It is, however, unfortunate that it often takes chronic or disastrous situations to propel change.

Ginseng and the Common Cold

I heard an interesting news item on CBC radio this morning that is germane to last night's class discussion. The efficaciousness of ginseng to fight the common cold is unproven according to experts. The popularity of Cold fX, a ginseng-based cold remedy developed at the University of Alberta, has spawned a number of other ginseng-based products making similar claims. According to the CBC report, Cold fX has shown to be of some benefit but further studies are needed. However, scientific evidence have not substantiated the claims made by manufacturers of other herbal-based cold remedy products according to Heather Boon, pharmacy professor at University of Toronto and an expert in alternative medicine. Health Canada is reviewing the claims made by manufacturers of such products but, according to the radio report, there is a backlog at Health Canada in evaluating these types of products.

I tried Cold fX once myself, but didn't feel that it made any difference in fighting my cold. It is, as stated in the CBC online article, an expensive treatment if one uses it as a preventive measure. Taking two tablets a day as participants in a study did, would cost $30 a month. However, there are those like Margaret Atwood and Don Cherry who swear by it as reported in a Maclean's article from 2005.

Here is a consumer information page from the manufacturers of Cold fX.

Remaking American Medicine: The Stealth Epidemic

The third episode of the PBS series, Remaking American Medicine, entitled The Stealth Epidemic, was an examination of the financial and human costs that chronic conditions such as diabetes and congestive heart failure are having on the American medical system.

It is hard to believe that these conditions are affecting 100 million Americans—30% of the population—consuming 70% of health care resources and threatening to overwhelm the American health care system.

An interesting choice for a title, The Stealth Epidemic—an epidemic that is perhaps furtively spreading amongst the population and surreptitiously consuming health care resources.

The program looked at the initiatives of two health care systems attempting to transform patient care and health care spending, one in Los Angeles and the other in Whatcom County, Washington. Through the leadership of administrators and doctors, nurse-run clinics and nurse in-home visitations are attempting to educate diabetic patients about managing their disease.

While these initiatives are making an impact and should be championed, the problems of policy, politics and economics—an underlying current in this series—present numerous hurdles.

Proofreading and Internet Errors

While searching in BMJ Publishing's database, Clinical Evidence, I came across a spelling error of a drug name. Under the entry CHOP 21, a chemotherapy regimen used in treating non-Hodgkin's lymphoma, a drug named rituximab is mentioned under the 'Summary' section of this entry. In this paragraph rituximab is misspelled as 'rutuximab.' I had come across the drug elsewhere and was curious to see if there were two drugs with very similar names. I checked the MeSH database, e-CPS, EMBASE and STAT!Ref and found no entry anywhere for 'rutuximab.' However, if you 'Google' 'rutuximab' --- which was my first instinct--- you will get, as of this date, about 141 hits. Of course, if you search under the correct spelling, 'rituximab,' you will get about 958,000 hits.

It is interesting to see how errors can so easily proliferate on the Internet. And, as well, it is a cautionary reminder of how we must be attuned to detail, especially in such a field as medicine.

Fortunately, Clinical Evidence has the drug name spelled correctly where it counts, under the entry that specifically discusses the drug, CHOP 21 plus rituximab. I emailed them about the error but have not heard back from them.

Remaking American Medicine: First Do No Harm

The second installment of this program, entitled "First Do No Harm," was a two part examination of how the American health care system and health care providers are not doing all that they can to live up to the oath "first do no harm."

While it was reported that 98,000 hospital patients die annually in the U.S. because of medical errors, a further 90,000 die due to infection they contract while in hospital. Among the various antibiotic-resistant bacterium, methicillin-resistant Staphylococcus aureous (MRSA) and the battle against it in the Pittsburgh hospital system was the focus of the program. Because of the competitive nature of the American health care system, hospitals are less likely to share information with their competitors about their success. Such is the case with initiatives to reduce infection rates. For some in the health care system, such a stance flies in the face of the oath "first do no harm." One such doctor, Dr Richard Shannon, Chief of Medicine at Allegheny General Hospital in Pittsburgh, has lead the battle against hospital-contracted infections, reducing the infection rate from 49% to 6%.

The second part of the program focused on how information technology can reduce errors in patient care. The personal story that illustrated this issue was that of an elderly woman suffering needlessly because of a hand-written medication order being incorrectly transcribed. According to the program, less than 20% of doctors in the U.S. use computers in their work. One such hospital in New Jersey is endeavouring to change that, having implemented at $40 million computer network and training physicians to use it. Patient information is entered in one place providing everyone involved in her or his care easy access. Such systems also have the ability to alert health care providers to such things as harmful drug combinations. On a much wider scale, there are those who are advocating for a national health information network.

Palliative Patients and Spiritual Distress: The Roles of Health Care Providers

Part I (of III)

In her review article, “Role of the Doctor in Relieving Spiritual Distress at the End of Life,” Karen Pronk discusses the roles of health care providers in relieving the spiritual distress of palliative patients. Drawing on a large body of literature, Pronk offers some definitions of spirituality and explores the issues related to spiritual care as raised in the research.

Good palliative care, as defined by the World Health Organization, addresses all aspects of suffering—physical, psychological, social and spiritual. “Spiritual care,” Pronk states, “requires awareness of the patient as a person, in the sense that the person is defined by his [or her] past roles and relationships, hopes and dreams, and a creative inner self, as well as a body in need of repair” (p. 419).

How one individual defines spirituality can differ significantly from another. For some, spirituality is something understood within the framework of traditional, organized religion and a belief in God (or in a god), while for others, their understanding of spirituality is far removed from such concepts. It is something not easily defined, and, as Pronk suggests, this is even more so for some health care professionals—“to the scientifically trained mind, ‘spirituality’ is a bit like jelly—good if you can grasp it, but notoriously difficult to pin down” (p. 420; citing Whipp). Nonetheless, “spiritual awareness has been widely recognized as heightened in people who are faced with their mortality, and it occurs frequently at diagnosis of an incurable illness” (p. 424).

Pronk, Karen. "Role of the Doctor in Relieving Spiritual Distress at the End of Life." American Journal of Hospice & Palliative Medicine 22, no. 6 (November/December 2005): 419-425.

Remaking American Medicine (RAM)

Watched the first segment of the PBS broadcast program Remaking American Medicine: Health Care for the 21st Century, entitled "Silent Killer." For those of you who might have missed it, it was a moving and inspiring documentary. I am bit bewildered as to why it was broadcast at 4 pm on a Sunday afternoon. Perhaps KCTS had no control over that but it is a program that deserves a primetime time slot and the possibility of more viewers.

According to the program, as many as 98,000 Americans die in hospital each year due to medical errors. Medical errors kill as many people each year as breast cancer, AIDS and car accidents.

The focus of this first program was the initiatives around patient safety that were result of the death of a young girl and how her parents, particularly her mother, saw a way of making a difference for other patients. The Kings' daughter was only days away from release from the renowned John Hopkins Hospital Children's Center when she died of dehydration. Originally, she had scalded herself in the bathtub and was being treated for burns. Despite her parents' concerns that she didn't look well and she was constantly thirsty, staff at the hospital claimed she was fine.

One of the problems that came to light out of this young girl's death is the hierarchical, top down structure of hospitals in which patients and their families are on the bottom rungs. There was a lack of communication between doctors and nurses and a failure to take the concerns of the parents seriously. This last point is something my previous posting raised.

With the money they received from the hospital for the loss of their daughter, the Kings set up a foundation to fund initiatives that improved patient safety. As a result of the policies put in place at John Hopkins, many lives have been saved. Sorrel King travels around the country speaking to health care providers, telling the story of her daughter's death and inspiring providers and hospitals to do things differently. Because of her work, other hospitals have implemented policies to enhance patient safety.

While I expected this program to be an exposé on the failings of the American medical system, it was in fact a powerful illustration of people's ability to make a difference.

More information about RAM can be found at their website and information about the program series at the PBS website.

The Physician-Patient Relationship

One of the central issues of the article discussed in my previous posting is that of the relationship between physician and patient. Evidence-Based Medicine concerns scientific method, basing treatment on the most rigorously researched and substantiated scientific evidence. Patients deserve such treatment and physicians no doubt want to provide it. But patients aren't their disease; they have the disease. In the delivery of treatment, there is another element to be considered--the need for patients to be acknowledged and validated as individuals and recognize in their physician they have someone who hears them.

Amongst the literature that addresses this issue, is a recent article that, as the title suggests, may go right to heart of the matter: Improving education on doctor-patient relationships and communication: lessons from doctors who become patients. The author, Dr. Robert Klitzman, interviewed 50 doctors who had serious illness to determine in what way their experiences as patients impacted their work as health care providers. As a result of their experience as patients, the doctors reported "increased sensitivity to patients’ experiences and empathy in doctor–patient communication. These findings can help in teaching doctors to see more clearly that their specific point of view differs from that of patients, and can be limiting. This study also sheds light on the wide separation between intellectual and experiential learning, which needs to be addressed further in medical education and research" (p. 447).

************

The route I took to find this article was through MEDLINE. I started my search using a good old fashioned concept: beside manner. One of the MeSh terms from which bedside manner maps is 'Physician-Patient Relations.' I combined this with another MeSh term: 'Empathy.'

*************

Klitzman, Robert. "Improving Education on Doctor-Patient Relationships and Communication: Lessons from Doctors Who Become Patients." Academic Medicine 81, no. 5 (May 2006): 447-453.

Health Care and Urban Aboriginals

In their research paper, " The Experience of Urban Aboriginals with Health Care Services In Canada: Implications of Social Work Practice," authors Ron Levin and Margot Herbert discuss the experiences of Urban Aboriginal Canadians as consumers of health care services, the lack of knowledge on the part of health care providers in treating such patients, and the implications for social work.

Some of the problems brought to the fore in their literature review centre around availability, accessibility and acceptability. While the issues of availability and accessibility often relate to the low socio-economic status of a large segment of the First Nations population, acceptability relates to the way in which health care services are offered. Treatment protocol can be incongruent with First Nations' cultural values and traditions and thus unacceptable. The lack of cultural knowledge on the part of health care providers translates into cultural insensitivity making communication between provider and patient problematic.

While this paper has more to say than what is presented here, it is with the implications for Social Workers that the authors conclude. Levin and Herbert state, "At a time when hospital social workers are attempting to create new roles and to acquire skills that will reinforce their usefulness in the hospital, there would be enormous “added value” if social workers could lead the way in bridging this very real gap in service for Aboriginal consumers" (p. 178).

I offer this brief summary as another perspective on the provisioning of health care and how health care information encompasses a vast range of issues.

Levin, Ron and Margot Herbert. " The Experience of Urban Aboriginals with Health Care Services In Canada: Implications of Social Work Practice." Social Work Visions from Around the Globe: Citizens, Methods and Approaches 39, no. 1/2 (2004) : 165 -179.

Catalogue Complexities

Depending on how you search for Compendium of Pharmaceuticals and Specialties (CPS) in the UBC Library catalogue--either by selecting the radio button 'Title,' as if it were a book, or selecting the 'JOURNAL/Ejournal title' radio button--you can be led astray.

In my original search for this item, I chose the latter, clicked 'Go' and was taken to the 'Electronic Journals at UBC' page within two links. There, next to CPS, a link is provided to 'Title details for ulrichsweb.com.' However, clicking this link leads to an error message, no data found. I was a bit confused by this and contacted the UBC Library ehelp and asked whether UBC had access to the online version of CPS. It was determined UBC did not have access. The ulrichsweb link, that is not working with this particular ejournal, is to Ulrich's Periodical Directory. By randomly selecting other ejournals in which the urlichsweb link was provided, I found some did indeed link to that directory while others resulted in the same error message.

However (and this is a big however as it would have saved me a lot of time and frustration), if I had searched under 'Title' it would have resulted in two records, one for the print verson, one for the online version. So, in fact, UBC does have electronic access to CPS. I discovered this last night in class when I searched CPS again, choosing 'Title.' At that time there was message saying that access to E-CPS, as it is called, was temporarily unavailable; today that has been remedied.

My concern is for other people searching the catalogue, such as med or pharmaceutical students searching off-campus, considering the CPS a journal/serial (it has a ISSN number) and quickly giving up when encountering the broken link. Is it any wonder that some people find OPACs intimidating, without even mentioning the sometimes complex interfaces and required search strategies of databases?

Additionally, while the UBC Catalogue--as do the OPACs of McGill University Libraries and the Toronto Public Library--list the publisher as the Canadian Pharmaceutical Association (CPhA), the 2006 print version and the Association website have it as the Canadian Pharmacists Association. Perhaps there has been a name change that is not refected in the catalogue. Significant? Maybe not. Just one of those minute details that some librarians and budding librarians like to obsess over.

http://www.pharmacists.ca/content/about_cpha/
who_we_are/publications_products/inside_publications.cfm#cps

The MEDLINE Database

Playing around in MEDLINE. Searching ascorbic acid using the shortcodes (*ascorbic acid/) produces 12865 results, while manually checking the Explode and Focus boxes results in 12963 citiations. One would think that these two entry strategies would produce the same results.

Is vitamin C effective in treating a common cold? Well, that all depends on whose randominzed control trial (rct) you chose to believe. Setting the limit on my search of ascorbic acid and the common cold to rcts produced 16 results. The 3 abstracts I read (UI 16118560, UI 12201356, UI 338079) reached different conclusions on the efficacy of vitamin C in shortening the duration of or preventing the common cold. Maybe chicken soup is the answer after all.

On another topic, for Consumer Health, the MedLinePlus website is amazing (http://medlineplus.gov/). Check out the Interactive Tutorials (upper right corner of the homepage). Finally, I now know the difference between good cholestorol (HDL) and bad cholestorol (LDL). The Canada Health Portal seems to be the Canadian equivalent (http://chp-pcs.gc.ca/CHP/index_e.jsp). It doesn't seem as intuitive or as well laid out as MedLinePlus, though I've only given it a casual glance.

Introduction

The creation of this blog is a requirement for LIBR 534 Health Information Sources and Services, a SLAIS course at UBC.

I am new both to blogging and health librarianship and have thus chosen to use the handle 'abecedarian' as I am just beginning to learn the ABCs.

As for the specific focus of the blog, that will unfold as the course rolls out and I begin to discover where my interests lie and what excites me in this field.