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In the United States it is estimated that 70% of patients with depression present to their primary care physicians, often with mixed symptoms and complaints. Furthermore, physicians fail to diagnose depression in more than 50% of these patients. [1] Time constraints limit the typical primary care office visit to 15 minutes or less, compared with 30 minutes for a typical visit to a mental health specialist. Compounding this is the fact that medical patients typically present with a variety of somatic complaints: fatigue, insomnia, pain, and gastrointestinal symptoms, which require a thorough evaluation to exclude potentially serious medical disorders, before diagnosing depression. Consequently, the underlying depression is unrecognized and undiagnosed. [2]
Unrecognized acute loss or unprocessed long-standing grief can also mimic many medical conditions. Complicating this picture is that depressive manifestations and symptoms of distress are part of the normal reaction to grief. A grieving person may experience chest pressure, palpitations, stomach pains, backaches, panic attacks, or increased anxiety. Unrecognized, unprocessed and untreated a person's grief response can create considerable additional anguish. Grief can lead to functional impairment, decreased productivity--both personal and professional, strained relationships, clinical or situational depression, and an increased risk of suicide. [3]
It appears that the trends for treating depression in the United States are shifting. Formerly depression was considered a condition to be treated by mental health specialists. But depression is rapidly becoming the responsibility of primary care physicians with few if any provisions for the additional time, screening resources, or additional training needed to address this new requirement in primary care. [4] Unfortunately, too, many insurance companies are placing restrictions on the number of office visits to non-mental health specialists that are allowed to individuals within a health care plan. Yet these are the often the same patients that continue to return to the clinic, office, or the emergency room with vague somatic complaints, requiring expensive, often unnecessary re-evaluations for their somatic depressive or anxiety symptoms, consequently increasing health care costs. [3,5]
Background Discussions
The idea to create the Journey
of Hearts website originated after many informal discussions with several
other primary care, internal medicine and emergency physicians. During
these discussions several concepts became apparent. Collectively, we were
seeing more people in office and emergency room visits who were dealing
with depression, stress, or grief, with less time to spend per patient.
Many of us felt that there was little else to offer medically once the
major medical problems were ruled out. These patients often were unwilling
or unable to seek further mental health evaluation or counseling due to
a variety of reasons. Their reasons included: time constraints, inability
to obtain transportation, unwillingness to accept mental health referral,
the limitation of mental health resources in rural communities, the costs
associated with receiving counseling, and the social stigma of a diagnosis
of depression, grief or anxiety.
Added to the increasing number of stressed, anxious and depressed patients being seen was the lack of preparation and information we had received during medical school and residency training for treating some of these borderline medical, borderline psychiatric disorders. The issue of grief and loss, in particular, was one that was generally relegated to ancillary staff--clergy, nursing, social workers or counselors. Yet, many of us as physicians realized that we needed information and resources to help our patients deal with these issues, when for whatever reason, they were coming to us, not the ancillary staff, for this type of support. We recognized that unprocessed depression and stress were impacting many of our patients, our friends and our colleagues, both personally and professionally. The upshot of these discussions was realizing we needed a resource to which we could refer patients, friends and colleagues for information, resources and support in dealing with the issues of grief and loss.
An Idea Emerges - A Website
Our suspicion that unprocessed
grief could and did significantly impact people was confirmed as we watched
the world-wide grief response [and the Internet response] to the deaths
of Princess Diana and Mother Teresa in August 1997. This was the final
piece to crystallize the idea. The resource we needed to created was a
website. By October 1997 we launched the Journey of Hearts website that would serve
as an educational resource, an adjunct to medical treatment, a "prescription
for a virtual hand holding." The underlying concept was to create
a site that would combine medicine, colors, and images, be informative
and interesting while providing reliable information and resources for
those dealing with a loss. It was important to include images and color
as a significant component in the design of the site, so as to have a resource
that could be experienced visually, without having to read the words, thus
benefiting those in the early or severe stages of grief.
Education on Grief and Loss
Journey
of Hearts combines medicine, psychiatry, poetry, prose and images to
provide resources and support for anyone who has ever experienced a loss.
Out of concern that the Journey of Hearts site was viewed primarily as
site for the public and not professionals, The
Medical Oasis was
created as a separate section of the site, designed to help health care
professionals. This second 'portal' debuted in October 1998 to provide
education and rejuvenation for those health care providers who work in
settings impacted by grief and loss. It provides a resource for the information
on grief that we found lacking during our training.
We utilized many of the underlying concepts of self-help groups providing useful information, sympathy, validation, and personal mastery to their members. [6] At the same time we did not want visitors to the site to be potentially disillusioned or damaged by those with "virtual factitious disorders," an unfortunate new result of the growing number of on-line support groups. Individuals are masquerading as being desperately ill, dying, experiencing seizures, or grieving an imaginary loss, in order to gain sympathy, attention and nurturing from the group. [7] To minimize the potential of patient pretenders, we have elected to not have on-line live 'chat rooms' or threaded discussion groups. The content of visitor comments placed on the site and the guest book is carefully monitored
In creating Journey of Hearts and The Medical Oasis we utilized the advantages of a website ( 1) that make it ideal as adjuncts for patient and physician education. We also recognized that a website serves as an ideal communication tool for those with a variety of limitations (Table 2) and a way to potentially reach those home-bound for a variety of reasons.
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These websites help to bridge the gap in treatment--in the transitional area between medicine and psychiatry. This area is one that has been long neglected by the medical field, relegated to nursing, clergy, social workers, counselors or psychiatrists. Transitional Medicine combines the best of medicine, psychiatry or counseling, and complementary therapies to provide resources and support in the transition period in going from loss to eventual healing; it also recognizes that the mind can and does play a significant role in both the healing and the illness processes.
The education topics on the site include: What is a Loss? What is a Significant Life Change? What is Grief? How Long will I Grieve? Am I Really Depressed? as well as many articles, stories and poems written by those who have survived losses. The site provides information for those trying to support friends through the process including How can I help someone who is grieving? and Being a Supportive Friend. Also included are several interactive screening questionnaires for depression and stress assessment, as well as information on suicide and how to recognize those at risk for suicide. The site is linked to the Samaritans for anyone who might find the site and be feeling suicidal.
Medical Web Resources for
Loss
In constructing our site,
particularly the medical resource section, we wanted to provide reliable,
credible information. With an amount of information equivalent to 800 novels
(each 400 pages long) being posted to the Internet each day, it is a daunting
task to sift through and find good reliable information. [6]
The extensive resource listing was compiled so as to have a referral base
for a variety of losses. The Medical
and Resource List is compiled of 90 sections relating to topics of
loss and over 275 resources or links to various organizations or other
websites sites. Some were suggested by colleagues, others were found in
medical journals or other medical sources. Many were suggested by members
of the Alliance of Healing
Hearts, those who have helped contribute to the creation of these sites.
By providing extensive resources and links to obtain knowledge it is hoped
that some of the fear of the unknown will be alleviated e.g. as with a
new diagnosis of diabetes, leukemia, heart disease or Alzheimer's.
It is our belief that understanding
a situation, a condition, or a disease allows for a sense of calmness from
knowing what is going on, or what to expect, rather than continuing to
fear the unknown.
Adjunctive Therapies Incorporated
into the Website Design
A variety of different adjunctive
therapies have been included in the information compiled within the site.
Many of these adjunctive therapies are now recognized within the established
medical communities as helpful, healing modalities.
(Please click on the hyperlinks to get
more information)
Establishing Guidelines
In constructing our websites,
we wanted them to be recognized as a reliable medical resource website,
not one of the many health care sites sponsored by a drug company, managed
care organization, or other savvy online health entrepreneur. [8]
To provide credibility for our
site we created our own internal guidelines established from the two main
sources JAMA [9] and the Health on the Net Foundation.
[10]
In keeping with these combined
guidelines, our websites the site provide information on:
The information on this site is provided for educational purposes only. The information is meant to provide a way of assessing whether or not professional help may be necessary. It is not meant to be a substitute for contacting the appropriate professional services when needed or self diagnosing and treating major medical or psychiatric illnesses.
These links and information
resources are provided to allow people to obtain useful and more accurate
information on a variety of subjects. To the best of our knowledge these
are legitimate, reputable, and informative resources, which have been reviewed
and/or recommended by members of the Alliance of Healing Hearts. If these
resources or links are determined to be problematic they will be removed.
I will be unable to answer any specific questions that might constitute a "consultation" due to the nature of the legal ramifications currently in place on the Internet. These consultations need to occur with a local physician counselor, or psychiatrist.
Start-up Costs
Once the decision was made
to create a website, there were several initial, unavoidable costs and
fees, such as the registration and activation of the URL's with our service
provider and the two years licensing fees with the InterNIC. The other
major investment was that of Corel PHOTO-PAINT 8, which was our photograph
and graphic program of choice, since we already had WordPerfect and experience
with the earlier versions of Corel PHOTO-PAINT. A way to get software for
graphic manipulation is with The GIMP
(GNU Image Manipulation Program). This is a freely distributed piece of
software suitable for such tasks as photo retouching, image composition
and image authoring. GIMP is written and developed under X11 on UNIX platforms,
so is an ideal 'free' tool for those with some computer background skills.
We hope to eventually start utilizing The GIMP for our websites.
We invested in the O'Reilly Dynamic HTML: The Definitive Reference Book for another $40.00 to learn more HTML. The HTML Writers Guild is only one of many different on-line resources for obtaining information on HTML. Helpful areas on this site include HTML Resources and Useful URL, making investing in a HTML book an optional cost.
Our total start-up costs were around $400.00, but with using free software for to create graphics and on-line HTML instruction, this cost could have been reduced to around $200.00 Maintaining two URL's runs $30.00/site/month. The only other major cost has been a great investment of time.
Creating Pages for the Websites
The earliest version of the
Journey of Hearts website
was made with Corel WordPerfect 7 HTML authoring tool. This tool severely
limited the available font options both the size and style. There are no
existing live pages from this stage of the site currently on the web. We
purchased the much hyped Hot Metal authoring tool (another $50.00) which
creates pages based on their standard templates, but were unable to easily
or quickly determine how to use this program so it was abandoned. Hot Metal
also created, now permanent problems with other existing programs already
on the computer. Searching for a better authoring tool, we downloaded Netscape
Navigator with their Composer tool for free and have used this as the primary
authoring tool since.
The web pages are created
visually in Netscape Composer and then the fine-tuning of the HTML code
is done in Notepad or Write programs. The majority of images from the site
are created in Corel PHOTO-PAINT 8, from the stock photographs from Photo
Gallery 5,000 Vol. 1 & 2 from Media Graphics, and many of the newer
ones are photographs that we have taken and developed onto disc by Longs
Drug Photo Developing. Those images we have obtained from other sources
have been credited on the site to the artists.
The
Medical Oasis was created entirely after switching to the Netscape
Composer.
The overall goal in authoring
webpages was to emphasize content, color and downloading time. We have
tried to create pages quickly accessible by the majority of browsers, and
de-emphasized the slow JAVA applets, which leave you waiting to load the
images. Since visitors to the site are grieving with little left for extra
patience, the pages were created to display text and color quickly and
fill in the colors as a person is reading.
Additional Internet Features
Utilized on the Sites
Many of the additional features
incorporated into the site are from a variety of 'free resources' (except
for their advertising banners) available on the Internet. We opted to utilize
these resources rather than developing our own, giving us more time to
emphasize the content rather than the CGI programs within the site.
Announcing the Sites
This was one area where the
site promising free services or free promotion had little affect. We discovered
that there were other many free ways of announcing and promoting the site.
Overall Site Links - Journey of Hearts & the Medical Oasis
  A
Website for anyone who has ever experienced a loss. |
 |
|
|
|
|
|
|
|
|
| Professional/Managerial |
20.2%
|
84
|
| Homemaker |
12.5%
|
52
|
| Administrative/Secretary |
10.8%
|
45
|
| Retired |
8.0%
|
33
|
| Not Employed |
5.3%
|
22
|
| Sales/Marketing/Advertizing |
5.1%
|
21
|
| College/University Student |
4.3%
|
18
|
| K-12 Faculty |
3.4%
|
14
|
| Technical/Engineering |
2.4%
|
10
|
| Executive/Senior Management |
1.9%
|
8
|
| Customer Service/Support |
1.9%
|
8
|
| College/University Faculty |
1.7%
|
7
|
| Accounting/Finance |
1.4%
|
6
|
| Writer/Journalist |
1.4%
|
6
|
| K-12 Student |
0.7%
|
3
|
| Other |
18.8%
|
78
|
| Total Respondents | . |
415
|
| Categories of Losses | Percentage |
|
| Death |
63.4%
|
192
|
| Disease |
10.2%
|
31
|
| Psychiatric Disorders |
7.6%
|
23
|
| Environmental Factors |
6.3%
|
19
|
| Disability |
4.6%
|
14
|
| Relationship |
4.0%
|
12
|
| Past Loss - Undefined |
1.7%
|
5
|
| Chronic Loss |
1.3%
|
4
|
| Significant Life Changes |
1.0%
|
3
|
| Total Losses | . |
303
|
The Statistics for the Categories of Losses experienced by those visiting Journey of Hearts were compiled from several sources:
Inherent Problems in Conducting
Surveys on a Website
It is difficult with a website
primarily dedicated to grief and loss to be able to conduct randomized,
controlled double blinded studies. Not only does the nature of the topic
hinder the process, but the very reasons the Internet is so appealing--the
anonymity--make it nearly impossible to design a hypothetical study surveying
the random visitor to the site. A person in the early stages of grief may
just be able to look around the site and absorb some of the images and
the colors, but would not be in a state of mind to fill out an on-line
survey. Thus, the potential sample population is biased to those visiting
the site who are feeling well enough or would have the time or inclination
to complete the forms. A study would be unlikely to include those who do
not find the site useful, adding more biases. Those who are 'lurkers' would
also not be inclined to respond, and therefore not included in any study.
(Lurking is an on-line phenomenon seen particularly in the listservers,
but also in groups. The term describes those who 'lurk' in the background
and follow along for months reading what is posted, but not participating
or commenting.)
However, recent statements
made by Dr. Alvan R. Feinstein, professor of Internal medicine at Yale
University, at a meeting on evidence-based medicine on clinical studies
are starting to question the overall usefulness of randomized controlled
trials. In this recent report on the meeting, researchers are being urged
to include more non-randomized and case studies in clinical trials, traditionally
the 'softer' data. Yet this soft data is the type of information that is
more useful to clinicians. [13] Most of the findings
that we could elucidate from the website would constitute softer non-randomized
data and unsolicited 'case reports' or site comments.
Analysis of Statistics from
the Journey of Hearts Website
We were able to generate
some statistics for the Journey of Hearts site from several different sources
and made some rather interesting observations.
As would be anticipated, the largest number of visitors to the site, with conservative estimations at over 90%, is from the United States. We are starting to see more international visitors. Based on anecdotal findings for other limited studies of using the Internet with Cancer support groups we felt that the site would be useful to people in the middle of the night. We were a bit surprised to discover that the site is being visited around-the-clock (Figure 1). Some of this constant site traffic may be from the international visitors, yet we have had many people write to thank us for being there in the middle of the night when they can't sleep--a fact demonstrated by the site hourly statistics.
In looking at the composition of those who have signed up to the Journey of Hearts E-mail Listing, numbering over 430 members since June, there were some predictable and other more surprising findings.
These finding seem to confirm what we had suspected based on many of the comments to the site, the Journey of Hearts has a wide appeal.
Other Methods for Judging
the Impact of the WebSites
Other ways we have judged
the site have been based on the consistent daily traffic since getting
the site linked with others and indexed by the search engines. Perhaps
the greatest demonstration of the impact of the website, is in the words
from the visitors to the sites. (Comments,
Guestbook,
Supporters)
The types of losses, the depth of emotion expressed in these comments continue
to be astounding. People have written messages of thanks after spending
hours absorbed in the site, including several men. Others have sent glowing
e-mails to inform us they are passing on the URL to all of their friends
and family. We have received many e-mails from those who have experienced
more distant losses, wishing the site had existed years ago when they had
faced a difficult loss. There have been messages of thanks for the color
and images that can be experienced and help even when a grieving person
is too distraught to read.
Comments and Anticipated Medical
Website Trends
Much of the appeal for these
websites, Journey of Hearts
and The Medical
Oasis, may be the result of in part functioning as a support sites.
By serving as a resource for medical and practical
information as well as emotional support, these sites are providing help
to patients, friends,
family and colleagues. These resources, medical and non-medical, are beneficial
for anyone dealing
with an illness or loss and in need of some support or additional resources.
Having an on-line
support site is particularly helpful, for patients as well as practitioners,
in this neglected area of grief and loss and stigmatized
area of depression. [6,14]
With over 22,750 visitors to the site since April 1998, we have been able to reach, teach, help and ultimately impact many more people than one could do within the confines of a traditional office practice, clinic setting or emergency room. The additional benefit to a website is that it is available at all hours of the day, no appointment necessary (and for the practitioner, an ability to provide a recommended resource without being on permanent call).
We believe the success of the Journey of Hearts site is because we are providing something that is lacking in many of the traditional medical practices--the ability to really "touch" a person's heart, to reach them and connect with them. The site also provides information to help in Gaining Knowledge to Regain Control. It is our belief that "Understanding a situation, a condition, or a disease allows for a sense of calmness from knowing what is going on, or what to expect, rather than continuing to fear the unknown." Knowledge provides a way to overcome that fear and begin healing from the loss or the significant change. Knowledge helps to return a sense of control over what often seems like a random or unfair occurrence, e.g. a devastating loss, new medical diagnosis, or sudden change in life circumstances. By being able to assume control one is able to more quickly accept the life change, assimilate it and start making some decisions about what to do next.
The numerous heart-felt responses we have received to the site indicate that the Journey of Hearts site is filling a much-needed niche on the net; it is helping in to bridge the gap between medicine and psychiatry, an area of "transitional medicine."
Both sites are combination,
integrative websites: part medical, part psychiatric, part art, part
literary, and part self-help
resources. By bringing together these different disciplines and combining
various aspects with images and
color we have developed a new style of medical website, one that
can be "experienced" as much
as accessed for medical information. Perhaps this new style will become
an example of the next medical website generation on the Internet,
taking the best of the medical resources and blending it with artistic
color and images, to create websites designed for patient
and physician web-education,
a resource accessible to anyone with a computer. [15]
In an era of "fast-food medicine"
we have created a resource where both patients and practitioners
can find a place of respite and
support to linger and heal their heart and soul. In a world where time
is a premium and becoming more impersonal, these "healing places" provide
a resource for
our patients and ourselves. In particular The Medical Oasis was created
as "a place of information, encouragement & relief for the dry, dark,
discouraging, days of training and beyond." One of the advantages of a
website is that it is always there, even in the middle of the night, as
a virtual shoulder to cry on or hand to hold.
[1] Perez-Stable EJ, Miranda
J, Munoz RF, Ying YW. Depression in medical outpatients. Under recognition
and misdiagnosis. Arch Intern Med. 1990;150:1083-1088.
[2] Kroenke K. Discovering
Depression in Medical Patients: Reasonable Expectations. Ann Intern Med.
1997;126:463-465. http://www.acponline.org/journals/annals/15mar97/depredit.htm
[3] Callahan CM, Kesterson
JG, Tierney WM. Association of symptoms of depression with diagnostic test
charges among older adults. Ann Intern Med. 1997;126:426-32.
http://www.acponline.org/journals/annals/15mar97/diagnost.htm
[4] Pincus HA, Sacks H.
Depression and Primary Care. Letter. Ann Intern Med. Oct 15 1997 http://www.acponline.org/journals/annals/15oct97/letter1.htm
[5] Unutzer J, Patrick
DL, Simon G, Grembowski D, Walker E, Rutter C, et al. Depressive symptoms
and the cost of health services in HMO patients aged 65 years and older.
JAMA. 1997;277:1618-23.
http://www.ama-assn.org/sci-pubs/journals/archive/jama/vol_277/no_20/oc6a03a.htm
[6] Osheroff, JA. Online
Health-related Discussion Groups: What We Should Know and Do. J Gen Intern
Med 1997;12:11-12. http://www.acponline.org/computer/sgim_edit.htm
[7] Stephenson J. Patient
Pretenders Weave Tangled "Web" of Deceit. JAMA;280:1297.
http://www.ama-assn.org/sci-pubs/journals/archive/jama/vol_280/no_15/jmn80141.htm
[8] Ferguson T. Digital
Doctoring--Opportunities and Challenges in Electronic Patient-Physician
Communication. JAMA 1998:280:13611-1362.
http://www.ama-assn.org/sci-pubs/journals/archive/jama/vol_280/no_15/ed80084x.htm
[9] Silberg WM, Lundberg
GD, Musacchio RA. Assessing, controlling, and assuring the quality of medical
information on the Internet. JAMA. 1997:277:1244-1245.
http://www.ama-assn.org/sci-pubs/journals/archive/jama/vol_277/no_15/ed7016x.htm
[10] HON Principles.
Health On the Net Foundation Code of Conduct for medical and health web
sites. http://www.hon.ch/HONcode/Conduct.html
[11] Pies R. Cybermedicine.
NEJM. 1998;339:638-39. http://www.nejm.org/content/1998/0339/0009/0638.asp
[12] Eysenbach G, Diepgen
TL. Responses to Unsolicited Patient E-mail Requests for Medical Advice
on the World Wide Web. JAMA 1998;280:1333-1335.
http://www.ama-assn.org/sci-pubs/journals/archive/jama/vol_280/no_15/br80383a.htm
[13] Parker SG. Randomized
Trials Seldom Much Help: Case Studies Include Useful, Soft Data. Intern
Med News November 1, 1998;31:46.
[14] Hersh W. Evidence-based
Medicine and the Internet. ACP Journal Club Jul/Aug 1996 http://www.acponline.org/journals/acpjc/julaug96/jcjaedit.htm
[15] Shortliffe, EH.
Health Care and the Next Generation Internet. Ann Intern Med. 1998;129:138-40.
http://www.acponline.org/journals/annals/15jul98/nextgenr.htm
Live Links within this Electronic
Paper
The links within this paper were verified
and determined to be working at the time this paper was submitted for on-line
publication. When available the URL for the Reference article have been
included and linked. These links have been provided here for those who
are interested in getting more information on these topics.
The external links to commercial sites
mentioned in this paper are provided for information only. We do not receive
any financial reimbursement for including the sites, nor does an inclusion
imply an endorsement. These links are provided as additional resources
for those interested in authoring their own websites, that were found
to be helpful (or in some cases not helpful) during the construction of
these websites.
Back to MEDNET 98 On-line Abstracts
MEDNET
98 - The Third Annual World Congress on the Internet in Medicine
Electronic Poster #
11
© 1998 Kirsti A. Dyer,
MD, MS, et. al. All rights reserved.
Last update 11/13/98 by Kirsti
A. Dyer, MD, MS
Journey
of Hearts, The
Medical Oasis
