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.