Janene Carey "A Hospital Bed At Home" A Review

Last week Janene Carey commented on the Podcast, “Home is Where the Heart is. Dying at Home". Janene Carey is the author of “A Hospital Bed At Home”. She thought I would find her book important. I read it a couple of days ago and it is an important book. Carey shares the personal stories of six caregivers who care for a loved one with a terminal diagnosis of either lung cancer or colon cancer. Amazon link here.

I’ve spent the past few days trying to figure out how to communicate what I am feeling and the importance of this book for me, for all of us. My struggle is not writers block or my own fear of writing but, how can I do justice to this book. Simply saying powerful, touching, evocative, disturbing, important, must read, feels excessive and boastful and a lot like bullshit. To not shout about these personal and powerful stories may fail to capture your attention and ultimate reading. Perhaps what is happening is that these stories are so close to my caregiving experience that I am stuck in a block of emotional amber. 

Most of you know about Donna’s passing, my caregiving, my view on end of life, and palliative care. And if you’ve read my posts or listened to my podcasts you also know that my experiences are a driver to educate and share because Donna and I were blessed to have received the care we did. And to know that care afforded us and me so much is a blessing that I want others to have access to. 

Janene Carey interviews five caregivers and shares her own story of caring for her mother. Each story is unique because we all look at dying, death, and loss differently. Each story is an exploration of the bond between caregiver and patient that exists prior to and during caregiving and after death. Carey takes the reader into the most personal and intimate moments any relationship faces, death of someone we love. These are stories of life and love and fear and loss and pain and joy. Carey examines the boundaries and bonds between the loved one and the caregiver  Over time she shows how those boundaries and bonds dissolve, the couples become one in compassion and love.

“People think it must be just horrible that it’s happened, you know, that the kids have lost their father and so on. But there were so many beautiful aspects of it that the word coping doesn’t seem to incorporate. What you’ve been through, in some ways it’s the most amazing experience. You’ve had the privilege of going through it with someone you’ve loved. They’ve let go totally in front of you and you’ve been trusted to be with them. ” 

I relate to this because Donna trusted her disease to me. 

“Guilt comes no matter what you have or haven’t done. To live without guilt after the death of a loved one, a person would have to accede to literally everything the other person wanted. And what that means is living one’s entire life in attendance of the other’s death …David Rieff "Swimming in a Sea of Death: A son’s memoir,”

 With each story, each paragraph we take the journey into caregiving and dying. The journeys are not easy and truthfully I recoiled at the detail of each and what needed to be accomplished practically and emotionally. These stories expose the harsh reality of caregiving and dying while providing a narrative how-to-guide. These stories become preparatory exercises for all of us. In his essay A Grief Observed CS Lewis notes that when he looks at couples he knows one will suffer grief and loss. 

I looked for hope as I was reading Carey's book and that was not easy but, it was there. As I read these stories I looked back at my caregiving to see where I’ve been and what I felt.  I was not alonewe are not alone. Others experiences offers hope and a sense of place in a world turned upside down. Hope is not necessarily the future, it is the past put into a loving embrace.  

Carey does not limit her insightfulness to only the caregiver but how the world views and interacts with the caregiver. 

"The Badens’ acceptance of Hugh’s condition as terminal was something else that other people found hard to understand. It wasn’t the right attitude. The prevailing cultural norm is to regard those with cancer as soldiers fighting a war, brandishing the indispensable weapons of hope and positive thinking. People seemed to think it was their duty to act as recruiting sergeants and push Hugh forward to the front line, equipped with ”

And we see where the physician fails during this time. 

“That’s right,’ she replies. ‘And when I contacted them, they couldn’t believe that neither the oncologist nor the GP had ever suggested getting palliative care. They told me palliative care should be brought in at the beginning, when the diagnosis is made, not towards the end like I’d assumed. That’s why I contacted them. Because he was going downhill and I knew the time was coming when I needed that help to care for him at home. So I downloaded a form from the internet and sent it in.”

Who should read this book? Anyone that has been a caregiver because it illuminates that what we experienced and we learn we are not alone or if we cannot find words or emotions you will find them on these pages. Anyone who is a friend of a caregiver. Anyone who may become a caregiver. Anyone who will be cared for or is being cared for. This book is a must read in todays aging population and healthcare system. 

#dwdchat #eol #caregiving 

Physicians Learning About Law and Its Application at End-of-Life

Professor Sawicki writing a guest post at HealthLawProfBlog. “How Medicine Learns About the Law” offers insight into medicine and law. Specifically she speaks to malpractice and end-of-life. 

  • Physicians learn about law from friends, message board, media screaming heads. 
  • Physicians enter into medicine as Sawicki says ’scared straight’ fear driven.
  • Medical professionals fear of liability is unfounded. Though all physicians fear being sued. A 2011 NEJM study showed 75% to 99% of physicians had faced a malpractice claim by age 65. Sawicki points out engineers and architects face the same statistic. 

it’s important that medical providers have a more realistic perspective of how likely lawsuits against them are to succeed

Sawicki addresses areas within my wheelhouse, end-of-life and advance directive. She points out that physicians are pressured from families to over treat a no-longer competent patient even with an advance directive requesting no treatment. Why? Being sued. In her research she states:

… have not yet found a successful suit by a family against a physician for non-treatment in compliance with a patient’s prior wishes.

This struck me because there have been reports and articles that saw this differently: only 12% of patients with an AD received input from their physician and "65% to 76% of physicians with patients having completed an AD were not aware it existed. And the providers, family members, and surrogates did not meet the patient’s wishes for EOL management.” 

Other articles point to how physicians were only 65% accurate in predicting patient preferences and tended to make errors of under-treatment even following a review of the advance directive.

Professor Sawicki makes the point, the right result medically is the right result legally. What is medically right at end-of-life is the patient having their wishes met. Those wishes need to be set in place well before end-of-life and with an advance directive as well as identifying a trusted respected advocate. Carolyn and I spoke about this in Podcast #5 Advance Directive

Both the law and medicine need to step away from the crushing media bullshit on malpractice change and focus on patient wishes at end-of-life. We need to ensure patient wishes are patient reality.  

You Talking to Me? Language and End-of-Life

Bridget Sumser, LMSW writing in www.geripal.org has a short yet powerful post titled “The Importance of Language”.

Sumser addresses the idea that language used to communicate with patients and caregivers struggling with depression can have a therapeutic power. She uses a powerful though all to communal example:

Question: What's her (the patient's) code status?
Answer: "She is a DNR”

You see it as well? She is not Marge or Jane. She is DNR. What struck me is not the obvious the act through language of taking a person and reducing them to a behavior or action. What was interesting is how language, which we all know, drives message, sent message message received. What do individuals hear with the words we use?

I am not going to deconstruct the couple arguing over he said she said and how one word in a statement or comment or observation can evoke a response. How we communicate especially around the topic of palliative care, hospice, end-of-life makes all the difference in the uptake of knowledge and understanding especially if we are advocating to those who have not experienced any of these. Those who live in the echo chamber of end-of-life and have been touched by it with a loved one do not readily reject language or miss meaning since we share a common vocabulary. But our online voice and though chats, blogs, etc. reach those who are not familiar or share our common bond. Therefore language, words, and images drive meaning, understanding, and uptake.

In The Sun Magazine interviewed Katy Butler. Butler is a journalist and novelist who wrote about her fathers stroke and how modern medicine decreased his chances of a good death. “The Long Goodbye” is that interview which you can read.

Butler in her interview uses language to communicate her points very well and I see those words and images as tools we can use to communicate beyond the echo chamber we reside in online. Here are some examples that speak to our message and may connect better with those who do not share our experiences.

“Death used to be a spiritual ordeal: not it’s a technological flailing. We’ve taken a domestic and religious event, in which the most important factor was the dying person’s state of mind, and moved it into th hospital and mechanized it, ..”

“…when we eliminated sudden death death, we also eliminated natural death, and we lost the distinction between saving a life and prolonging a dying.”

“We’re not isolated atoms in space — at least, that’s the way I see it as a Buddhist. We’re part of a web of existence, and the “patient” is not just the patient but the family that will survive him.”

"If you’re a doctor, I think you have to look at whether you’re adding suffering to the family as a whole when you extend the life of an individual.”

These are some examples that connected with me and believe will connect with others facing end-of-life or earlier when they have a diagnosis that will end in death. Those are powerful images from Butler’s interview and the narrative about her father and mother. These are the messages we can use to communicate and use as discussion points when we write or speak on these topics. I am not dictating one message over another, her words vs. your words, vs. my words just that the broader and more expansive our vocabulary the better the chance we have to send a message that is received. Of course our listeners our audiences need to be receptive to learning but that is an entire separate discussion on adult learning. 

For me there is no good death. All death sucks. What we can do is advocate for and try to achieve a good dying so everyone involved is present and active in life and family during that time. 

Yet Again The French Offer the World Some Health Lessons

Beck, Richard, Nguyen-Thanh, et. al published “Use of the Internet as a Health Information Resource Among French Young Adults: From a Nationally Representative Survey” in the Journal of Medical Internet Research. 

The objectives 
(1) to provide information about the prevalence of Internet use for health-related purposes in France among young adults and define the sociodemographic, socioeconomic, and health-related profile of users, (2) to investigate the context and the impact of the information found on health-related behaviors, and (3) to assess the level of trust young adults have in the information found on the Internet.

This study was done in 2010 and surveyed 27,653 individuals in France. 

  • 48.5% (474/977) of Web users aged 15-30 years used the Internet for health purposes
  • Those not using the Internet for health purposed 75% reported information from other sources, 74.1% preferred seeing a physicians, 67.2% did not trust the information on the Internet.
  • 80% (371/474) young online health seekers considered information found online reliable. 
  • Women, individuals with higher sociocultural positions and individuals with executive or manager positions were more likely to use the Internet vs. employees and manual workers.
  • Women with children experiencing psychological distress participated in online health seeking. 
  • Online health seekers aged 15-30 years 33.3% reported they changed their health behaviors (e.g. frequency of medical consults, way of taking care of one’s health) because of online searches. 
  • The most common factors associated with different outcomes of change were psychological distress, poor quality of life, and low income. 

None of this is significantly new to those of us in the echo chamber of social media, epatients, blogging, etc. Yet this study demonstrates that the young will use the Internet, they trust it, and they will change behaviors. Clearly they have grown up online. They are not estranged from the Internet and embrace it. This group will likely be seen by physicians of similar ages so the patient and the physician share a common trust of the Internet for health seeking knowledge. 

This bodes well for healthcare going forward. As this group ages and faces illnesses they will have the tools and knowledge to find information and they will have the support of their physician. Those two factors alone will drive sea change in healthcare. We must cultivate and grow this trend. 

It's About Time? Mapping Physician Twitter Networks

Mishori, Singh, Levy, et. al. writing in JMIR offer the first I’ve see mapping physician Twitter networks. The article is titled "Mapping Physician Twitter Networks: Describing How They Work as a First Step in Understanding Connectivity, Information Flow, and Message Diffusion”

The objectives were to describe the characteristics of four medical networks, analyzes their theoretical dissemination potential, their actual dissemination, and the propagation and distribution of tweets.

The four networks were, The AMA, the AAPF, AAP, and ACP. Visualization was used to determine overlap between the groups, actual flow of tweets for each group was assessed and examined using a Twitter data aggregator Topsy. 

Results showed that overlap across groups is small limiting the community cohesion and cross-fertilization. AMA followers’ network is not as active as the others though the AMA posted the largest number of tweets while the AAP posted the fewest. Retweets were low showing sharing of information was well below potential. 

The authors make an important observation, dissemination of information has a huge potential in these networks. The more individuals within a group Tweet the larger the dissemination. The following is striking 

...the percentage of followers that have not sent any tweets is 6.92% for AAFP (522/7546), 8.17% (962/11,768) for AAP, 7.22% (430/5955) for ACP, and 18.43% (39,275/213,122) for AMA.

It shows that when those who have not sent any tweets are removed from the dissemination network the potential only decreases by 1%. Yet when all followers who have sent only 10 or fewer tweets are removed then the AMA group information dissemination potential falls by over 35%. The other professional groups impact remains at less than 1%. The AMA network is not as active as the others and the AMA has a larger portion of individuals who are not tweeting. 

Retweeting is key in the sharing and dissemination of information and the potential of networks to drive information. The authors examined tweets sorted by number of retweets. Since the authors only examined dissemination up to Level 2 followers and not beyond retweets may be disseminated to a great extent. 

The number of retweets and the number of individuals who received the tweet is less than 0.2% of the total potential. 

Conclusions: To increase the dissemination potential, medical groups should develop a more cohesive community of shared followers. Tweet content must be engaging to provide a hook for retweeting and reaching potential audience. Next steps call for content analysis, assessment of the behavior and actions of the messengers and the recipients, and a larger-scale study that considers other medical groups using Twitter.

This examination of physician networks and Twitter is fascinating and rich in information. It points to more study and hints that content is key. Why aren’t I surprised. I know for me on Twitter it takes time to get comfortable with it and what I retweet is driven by its value to me or to others who I think it will have value for. So that may be part and parcel of this study the need to look at content analysis and beyond. 

I see this study demonstrating how similar Tweeter is to Communities of Practice. CoP can be defined as 

Communities of practice are groups of people who share a concern or a passion for something they do and learn how to do it better as they interact regularly.

This fits with the goal of the authors to look at content analysis. You and I are only interested in what we are interested in. How can someone in the AMA network with an interest in say diabetes management in patients with CHF find others with the same interest in the AMA and across other networks? They seem not to look across networks and are not keying content to need. 

I think the goal is to create mini Twitter networks that mimic CoP? That in my mind is the real potential for Twitter and other social media as information and learning platforms. Thus CoP behavior may occur outside Twitter occuring within institutions and among colleagues. Twitter, FB, G+ etc. are perhaps where physicians and learners go to find information specific to the problems they want to solve and from there they join smaller networks or communities.Yet I think we are a long way from that. Either online or off line. When you talk to me about problems I want to solve I am interested.

And there is this study which was referenced in this article “The Role of Social Networks in Information Diffusion”  The PDF is available on the hyperlink. No paywall. 

Online social networking technologies enable individuals to  simultaneously share information with any number of peers. Quantifying the causal effect of these mediums on the dissemination of information requires not only identification of who influences whom, but also of whether individuals would still propagate information in the absence of social signals about that information.

This Facebook study demonstrated the following:

We show that, although stronger ties are individually more influential, it is the more abundant weak ties who are responsible for the propagation of novel information. This suggests that weak ties may play a more dominant role in the dissemination of information online than currently believed.

This has been said in may places and studied. It is worth noting strong ties are our echo chamber, weak ties are those on the edge who will introduce us to something we may not have considered or known. And since we are a weak tie in return information we share may not known therefore they share what is new and different. 

Grief Mirrored in Language and Metaphor: Karen Russell

I’m a huge radio and podcast listener. It’s a primary means for learning, relaxation, and escape. Today listen to a Fresh Air interview with the author Karen Russell ''Sleep Donation': A Dark, Futuristic Lullaby For Insomniacs" I was struck by her language and metaphor. The narrator  of that novel is suffering grief from the loss of her sister. All italics are from Karen Russell and the interview. 

The longer I listened the more Russell’s language evoked new reflection on my grief and loss which I have written about herehere, and here. Yet hearing her words and seeing the images they evoked made me realize I may just be “water boarding the reader” with what I have shared. I thought I would revisit this old chestnut grief to see if I could better capture it. 

Early in the interview she reads from her book and reads 'to be evicted from your dreams'. That for those who have not suffered grief is exactly what it is in six simple words. We have been evicted from our dreams of the life we had, the life we were working toward, and life we wanted. Suddenly we are thrust into a 'Subaqueous state’. For me it has been that way since Donna died. I reside underwater unfocused and floating while struggling to find the surface. 

At the end of the podcast she is referring to another book ‘Swamplandia’ and said ‘Cue ball break of grief where everyone goes into their separate pocket’. How true and accurate, we all end up in our own places when we grieve. Everyone’s grief is different. And I will add for me it is not one place, it moves. My grief is organic. A HCP said to be “You have adapted well to your loss.” Wanting to be the good patient I drank that kool aid without measure. It was bullshit to a point said to clear the desk and chart notes. Yes there are days I feel adapted to my loss, yet that adaption is a moving target that requires us to keep careful aim in order to understand and learn. 

I will live with my grief as my partner and manage it like a tool to grow, learn, and motivate. I’ll not allow it to weaken me. Though I have been evicted from my dreams I will work to regain them each night. 

Physician Rating Websites Who Uses Them: A New Study

Terluter, Bidmon, Rottl, submitted an original paper in JMIR "Who Uses Physician-Rating Websites? Differences in Sociodemographic Variables, Psychographic Variables, and Health Status of Users and Nonusers of Physician-Rating Websites

Physician-rating Web sites (PRW) exist and are growing, yet use by patients falls short. The authors set out to examine different variables, including sociodemographic, psychographic and health status of users and non-users. 

29.3% of the sample knew of PRWs with 26.1% said they had used a PRW. Those patient users who were younger and more women participated. Also more highly educated and those with chronic diseases were higher in use. Interesting to note users were more positive about the Internet than non-users with a higher digital knowledge. Not surprising but nice to see it captured in a study. 

Adding psychographic variables and information-seeking behavior variables to the binary logistic regression analyses led to a satisfying fit of the model and revealed that higher education, poorer health status, higher digital literacy (at the 10% level of significance), lower importance of family and pharmacist for health-related information, higher trust in information on PRWs, and higher appraisal of usefulness of PRWs served as significant predictors for usage of PRWs.

In the end use of the Internet and PRW remain the domain of a younger demographic, women, and those chronically ill. It comes down to what we all know, design, usability, and accessibility makes a difference. And the authors note clearly we need speak to the innovators, females, better-eduated, and younger users. This will help you to identify out what strategy is needed for a PRW and how to include a social media to customize messaging. This is a great study filled with information we can use to improve patient physician engagement

Empowered Patients: The New Black or Old Hat?

Pam Todd writing on HealthWorks Collective “From Patient Partner to Patient Leader” makes the case that empowered patients are an integral part of our healthcare landscape beginning with clinical trials through to patients and caregivers active participation in their care. I will not argue with that nor the fact tons of research show how much time people spend searching online for healthcare information and knowledge. 

Todd further identifies how the FDA is listening to patients, the WikiProject Medicine, and this quote:

“The patient is not the partner in medical care; the patient is the leader, the pilot, the decision-maker.Patients don’t need recommendations; they need information about the added benefit of one therapy versus another balanced against the added harm of the therapy. People are smart enough to make the trade-offs; they don’t need to be told what to do.”

What then is the role of the doctor? Here is their answer:

“Changing medicine from a ‘telling what to do’ profession to a ‘telling the patient the information’ profession will lead us to a better system of care, better in every way. The profession of medicine should have the goal to serve and inform, not recommend.”

This exists, it works, and it fits with adult learning, people what to find solutions to problems they are having. If my health is crap that’s a problem and I want to solve. This is demonstrated by the fact people with chronic illness and those caring for them seek health information at a very high level and if they have two illnesses it is even greater. You can find more information herehere, and here. Yet in my mind I see the physician being the weak link in this model. This is especially true for older physicians who came up through the time of parental medicine where the learned medicine man (woman too) knew all and lead not listened. This is changing over time with younger physicians who have been raised on FB, Twitter, Google Search, etc. having an easier time identifying with these empowered patients. 

How can first measure what impact patient driven knowledge and empowerment is having on their care from their own view, their HCP behavior, evidence based outcomes, and does a physician who supports and drives patient empowerment see different outcomes from those who do not? Finally dose the HCP have the time to respond to engaged patients effectively?

Finally my chant at times is not WebMD but MyMD. That is where physicians can make the biggest difference in managing and engaging patients by becoming a resource for knowledge or as said above "to serve and inform, not recommend.” This is about leveraging the current patient to improve outcomes of those who are engaged, helping those seeking to engage to be more productive, and getting those who may not want to engage to consider it part of their personal health portfolio. 

Early HIV Treatment: The Value in Life and Dollars

Bill Gardner writing on The Incidental Economist examines two studies in Health Affairs that look at “Treatment as Prevention: The Value of Early Treatment of HIV Infection” 

Compared to people who initiated cART late…, those who initiated treatment early (with a CD4 count of 350–500) could expect to live 6.1 years longer, and the earliest initiators (with a CD4 count of more than 500) could expect an extra 9.0 years of life.

cART is expensive, but it turns out that

[t]he total value of life expectancy gains to the early and earliest initiators of treatment was $80 billion, with each life-year valued at $150,000… The value of the survival gains was more than double the increase in drug manufacturers’ revenues from early cART initiation.

Clearly more studies similar to this are needed for other diseases. What are the benefits for life and what are the economic benefits. 

Thinking About What You've Learned: Key to Improving Care

Renner, Kimmerie, et. al publishing in JMIR "Web-Based Apps for Reflection: A Longitudinal Study With Hospital Staff" examines how a web based app can improve reflection which is a key component of learning and aids us our ability to apply new knowledge to previous experiences in order to create new learning. Reflection does not just happen since it is complex and demands the learner develop skills on reflection. 

One area where reflection and reflective thinking are broadly researched topics is in the health care sector. A special focus of previous research has been on the education of nurses and physicians. In hospitals, reflection helps the staff combine theory and practice and enables them to turn experiences into learning opportunities. In this way, reflection and reflective work behavior foster continuing professional development. Research findings in this field suggest, however, that reflectivity is indeed not an easily applied skill. Instead, guidance and support are needed to achieve higher levels of reflection.

The study had 167 employees from a hospital participated. They were involved in user studies and workshops to better understand reflective behavior and the needs of the hospital staff. Each was provided with devices and apps. The apps they were given were DocTrainCLinIC-The Virtual Tutor, and Talk Reflection

The primary findings to test whether the introduction of apps that support reflection would affect staffs actual reflection behavior at work. 

As expected, there was a positive relationship between reflection behavior and job satisfaction, indicating that higher levels of collaborative reflection processes go along with enhanced job satisfaction among participants in the hospital. This further supports the findings of other authors regarding a relationship between informal learning and job satisfaction as introduced above. The content of our collaborative reflection scale suggests that being provided with sufficient time to reflect, reflecting collaboratively in a team, and discussing work with a supervisor go along with a higher level of job satisfaction.

This is an excelelnt read but more importantly it offers a way to help medical student and all HCP improve their ability to apply what they've learned to their experiences to produce new knowledge that improves care.