Palliative-SW is very pleased to host the October Palliative Care Grand Rounds (PCGR). As newcomers to this kind of blogging and still learning the ropes since our summer 2010 launch, we can’t think of a better way to get our feet wet. If you’re visiting us for the first time, Palliative-SW is an emerging blog maintained by the Social Work Hospice & Palliative Care Network (SWHPN) that aims to contribute a social work perspective to hospice and palliative care blogging.
Here are the topics we want to focus on this PCGR:
- Media Coverage & the NEJM Study
- Other New Research Findings
- Social Work & Voice
- Let’s Speak Frankly
- Grief & Bereavement
- Technology, Treatment & the Web
- Therapeutic Social Media
Media Coverage & the NEJM Study:
The palliative care focus of the mainstream media this past month, and subsequently the blogosphere, was still heavily focused around the oncology study published in the New England Journal of Medicine (NEJM) that showed extended life as a benefit of palliative care in lung cancer patients. See our August 22 post. This coverage is welcome and sheds a positive light on the important work of palliative care teams; however, we hope it will not bring false hope to patients that palliative care is a walk-in-the-park miracle treatment. While there were myriad responses to the NEJM article, most of which were reported in previous editions of PCGR, bloggers continued to post on the study as media coverage continued.
The coverage that drew the greatest alarm from the blogosphere was that of NBC’s Nancy Snyderman on NBC Nightly News with Brian Williams. Her video segment, Helping Patients Live Better, Longer and the accompanying physician interview and patient interview depicted the palliative care process as a relaxing complement to other rigorous cancer treatments. Pallimed’s response to the NBC segment, posted by Dr. Drew Rosielle, hit the nail on the head. “I’m the friendly person who’ll stick you on a treadmill and refer you for qigong,” is the message taken from the NBC segment about what a palliative care practitioner does. Of the video NBC posted, Drew writes:
“It’s kind of like watching one of those Zyprexa ads where you see that attractive middle-aged woman leading this meaning-filled, poignant life full of family and work and you say to yourself ‘Gee I wish I felt like that & I don’t even have bipolar disorder.’”
While we are all happy palliative and hospice care are getting positive media attention, we hope the focus will provide comprehensive information and not leave readers and watchers confused about human mortality and the superpowers of palliative care.
Other New Research Findings
Hospice Care also got kudos this month when another recent study about how in-home hospice care makes post-traumatic stress disorder diagnoses less likely, was featured on the blog of the Hospice Foundation of America.
Healthwatch, the Hill’s Healthcare Blog, posted about new hospice benefits for terminally ill children.
Researchers from Mount Sinai reported this month that health care costs for terminal cancer patients who disenrolled from hospice were nearly five times higher than those who continued in hospice care. The study also showed that 33.9 percent of the patients who left hospice were admitted to an emergency department, while only 3.1 percent of those who remained in hospice were.
More evidence for the impact of serious illness on family members and the need for screening and support was presented by researchers in Denmark. This study reported an increased risk of hospitalization for an affective disorder in male partners of breast cancer patients. As Medwire News highlighted, the risk of hospitalization for depression increased with increasing breast cancer severity. The risk was 30% higher among men whose partners had one positive lymph node at diagnosis and 85% higher among men whose partners had four or more positive lymph nodes, compared with men whose partners did not have breast cancer.
Social Work & Voice:
We think it’s fitting for Palliative-SW to host PCGR this month as September 2010 was the 150th birthday of Jane Addams, Nobel Peace Prize winner and iconic pioneer of the social work profession. A post on SocialWorkersSpeak.org, maintained by the National Association of Social Workers (NASW), announced the publication of a new biography: Jane Addams: Spirit in Action, by Louise W. Knight, which readers can download a preview of here.
The August 2010 edition of Progress in Palliative Care was a special social work issue featuring manuscripts from Susan Blacker, Ruth Powazki, Susan Cadell, Iris Cohen Fineberg, Malcolm Payne and Grace Christ.
SocialWorkersSpeak.org blogged this month about a briefing on Women’s Health at CBS’s Television City, which featured a panel of three social workers, one of whom works in end-of-life care with oncology patients. The panel brought attention to social work issues and roles that could be incorporated into medical, crime and other television programs.
Socialworkpolicy.org, the blog of the Social Work Policy Institute, announced the release of a report of the recent symposium Hospice Social Work: Linking Policy, Practice and Research, which recommends action steps to enhance excellence in hospice care. It also provides and overview of recent social work publications and research in palliative care.
Let’s Speak Frankly
The Hospice Foundation’s Hospice and Caregiving Blog posted this month about Challenging Communication Between Doctor and Patient. The issue of what doctors say and what patients hear was the subject of a recent Boston Globe health and fitness article about research that suggests patients often don’t have all the facts, even when doctors feel they have conveyed all the information to them about pros and cons and informed consent.
Eric Widera of GeriPal weighed in on the topic of language this month in his post: One Failing of POLST looking at the “value-laden” phrases used in medicine that rarely clue us in to what they mean for an individual’s treatment preferences. Widera takes issue with “Full Treatment” being included on the POLST form, and looks at the difficulty defining phrases like “Failure To Thrive” and “Withdrawal of Care.”
Also on language, Malcolm Payne, who maintains St. Christopher’s Blog and brings to light developments in social care and social work that affect palliative and end-of-life care, writes about “making people bereavement-literate so they know what to say if someone is distressed,” in Universal Bereavement Literacy Required. In another post, Malcom writes about changing our language to measure something positive rather than something negative.
Grief & Bereavement
Social workers play a large role in attending to grief and bereavement in hospice, palliative and end-of-life care, and Palliative-SW is paying special attention to the recent debate about the removal of the “bereavement exclusion” from the DSM. Variations in bereavement and stories of loss were featured in many posts this past month, and the DSM debate begs the question: When should grieving be considered a disorder?
Is Emotional Pain Necessary? This NPR piece looks at the removal of the “bereavement exclusion” in the new DSM’s diagnosis of major depression. The ramifications of this decision have been the topic of discussion of late on the SWHPN online member forum and other psychosocial groups, and there are concerns that removing this exclusion may hasten to pathologize the grieving process and lead to patients being unnecessarily medicated with anti-depressants. Bereavement expert Holly Prigerson says:
“What underlies a lot of this discussion is: Is it harmful to interrupt a normal grief process by medicating?”
The New York Time’s Opinion page also focused on this change to the DSM in Good Grief, by Allen Frances. Frances writes of the change:
“This would be a wholesale medicalization of normal emotion, and it would result in the overdiagnosis and overtreatment of people who would do just fine if left alone to grieve with family and friends, as people always have. It is also a safe bet that the drug companies would quickly and greedily pounce on the opportunity to mount a marketing blitz targeted to the bereaved and a campaign to “teach” physicians how to treat mourning with a magic pill.”
Frances also blogs for Psychology Today and posts on a Possible Compromise on Grief vs Depression, exploring both sides of the argument but concluding:
“Reasonable people can disagree about the precise duration requirement before grief can be considered mild depression. Pies/Zisook suggest one month. I am OK with the DSM-IV-TR two months. Some people think it should be longer. No one but DSM 5 is suggesting two weeks—which seems like a really bad idea.”
Musings of a Distractible Mind, a blog by a primary physician with a nice way with words, considers the case of a woman who lost her husband 10 years ago and is being pushed by those around her to move on and stop grieving. Blogger Dr. Rob writes:
“There is no rule book on grief. Is it better to move on quickly, or does it show the person is self-centered enough that they don’t feel it as much? Is it better to grieve for a long time and deeply, or is it a sign of pathological dependency? People want to make rules for which there can never be rules. People don’t like the messiness of life, and don’t want to be made uncomfortable when others remind them of that messiness. But pain and loss are as much a part of life as joy and love (in fact, you could argue they are more a part of life for many people).”
Bloggers and online stories also highlighted resources available to those grieving. In Now we are alone: Living on without our sons, NPR’s All Things Considered featured a piece written by a couple bereaved from the tragic loss of their two sons about their experience at the 33rd annual gathering of The Compassionate Friends, an organization for parents who have suffered the loss of a child. On Caregiver’s Corner, Eric Worsham, MSW, blogs about the importance of taking control of your grief experience in order to heal.
The Hospice Foundation of America’s Hospice and Caregiving Blog posted on recent television coverage about bereavement camps for children, including a Today Show feature on Comfort Zone Camp and an ESPN feature on Camp Erin.
Technology, Medicine & the Web:
Remember the Jetsons and their robot maid Rosie? Is this our future? These thoughts came to mind this month as many posts about technology’s presence in treatment, from diagnosis to consultation to professional clinicians learning from each other’s experiences. The September 4 New York Times article The Boss Is Robotic, and Rolling Up Behind You smacked of the Jetsons, complete with a multimedia graphic of the robotic doctors who may soon be rolling into patients’ rooms. NPR also highlighted the less than personal touch now used in medical exams.
How can technology fit into medicine? OrthoOnc, a blog by Dr. Felasfo Wadajo, had a post this month, Moving the Doctor’s Office Online, highlighting new smart phone apps, including Emdat Mobile for medical dictation and immediate transcription, and PerfectServe Clinician, an automated answering service for hospitals and physicians. OrthoOnc also posted about the new iPad app that allows for visual diagnosis—VisualDx Mobile.
A recent post on 33 Charts Blog states that physicians 30 years from now will be remarkably different from the way we understand them today. Blogger Dr. Bryan Varabedian says diagnostics will be mostly replaced by technology, and patients will be more empowered with increased access to information.
Blogger Christina Thielst of Christina’s Considerations attended the mHealth event in San Diego in September and writes:
“Over 80% of patients consult the Internet for a second opinion and increasing numbers are using their smart phone.”
Whether patients or practitioners are consulting WebMD, using smart phone apps or posting status updates, it’s undeniable that technology and online resources play a greater role in treatment today. Palliative Care Grand Rounds and the blogs we are highlighting are another example of this proliferation.
Can modern technology fit into social work practice? A post from the University of Calgary highlights the benefits of digital storytelling as a community development project with older adults. We’d welcome your comments on this emerging topic!
Therapeutic Social Media
A short segue from technology… social media is not just a way to keep in touch with friends. Twitter, a site most often associated with celebrity gossip, has also become a regular forum for palliative medicine. Christian Sinclair is hosting a Hospice and Palliative Medicine (#hpm) Tweetchat on Wednesdays (9pm Eastern) for clinicians to discuss current developments in the field. Social media can also help professionals advocate for a cause—Confessions of a Young Looking Social Worker blogged in September about National Invisible Chronic Illness Week, a virtual campaign providing support to those suffering from a chronic illness.
In an interesting post on 33 Charts Blog, Dr. Bryan Varabedian, wrote September 7 about therapeutic use of social media by some family members and patients who take comfort in posting about their diagnoses, treatments and emotional states. He talks about the different “transparency thresholds” of individuals plugged in to various online social networks.
We found some examples of patients who found blogging to be therapeutic during their illnesses. The BBC reported on the 90-year-old blogger who is in hospice care in Ohio and has found new life through social media. Dr. Len’s Cancer Blog’s post A Message from Curt, was especially poignant. Dr. Len highlights Curt, a young man who had just started a new job and one day suffered a seizure only to find out that, not only did he have cancer, it had spread through his whole body. Faced with the decision to continue with treatments or pursue more comfortable care, Curt laid out his choices on the blogosphere to offer his readers “the flavor of choices you can be faced with way before you think you’ll need to.”
While it may not be everyone’s preference to put it all out there, if online status updates help some patients and family members cope with life-threatening illness and treatments, hail to the social network.
Thanks again for the opportunity to host PCGR. Palliative care has long struggled to define itself, and social workers know what that feels like. Social workers are key members of palliative care teams due to their primary focus on quality of life and the family. Nonetheless, there is a constant need to define the social work role and give social workers a strong voice. We applaud PCGR for inviting us to contribute from a social work perspective and for incorporating other social work blogs like Confessions of a Young (Looking) Social Worker in this dialogue. We believe interdisciplinary communication and an understanding of the strengths of all professions working in hospice and palliative care can ensure quality care for patients and families.
The next host of Palliative Care Grand Rounds will be Pallimed Arts & Humanities on November 3rd.