On Nov.21, 2011, Christian Sinclair, M.D., a.k.a. @ctsinclair on Twitter, hosted a video watching event on Twebevent.com concerning the PBS Frontline program “Facing Death.” The television episode took a deep look at end of life issues in the ICU, filled with real-life vignettes of families facing tough decisions. With over 60 contributors and 466 tweets, the event was a highly successful gathering of interested medical professionals and lay people all interested in delving into the often wrenching decisions at the nadir of life.
The program was divided into topics, which were played for the chatting participants who used the hashtag #facingdeath to comment during and after each of the segments. The chats were very lively and zeroed in on family dynamics, authority relationships, the often shifting perspective of patients and family regarding end of life care and several other matters. I have tried to summarize what the group captured and what each of us gained in participating in the chat. I truly believe the video & chat format represents a wonderful way to explore a crucial health topic in an informed and mature manner. It was the combination of using the video in a social media context that brought the conversation to life.
The Way We Die
In the video, one of the doctors intoned, “Nobody wants to die and nobody wants to die badly.” The #facingdeath chat group immediately got busy, and @ctsinclair stated, while no one wants to die, it is “tough to prognosticate when that is.” Therein lies the challenge.
The majority of the participants of this chat are advocates in some respect of hospice and palliative care, so they became quite critical of the doctor’s claims in this program that “…There is almost always something we can do to put off the inevitable.” The group’s differing opinions are summarized by the comments below:
@renee_berry: “There is almost always something we can do to put off the inevitable” [not always]
@renee_berry: “doing nothing” language #nothelpful …Palliative Care is SOMETHING
doctorfisher: never liked “doing nothing” as a description of palliative care!
Throughout the discussion, it was clear that the participants were respectful and thankful that these families had consented to be filmed for the Frontline program, acknowledging their generosity.
What was most instructive were chat moderator Dr. Sinclair’s informative side bars regarding standard of care. For example, during the film, a doctor was featured bowing over a patient in bed raising issues of end of life care, prompting Dr. Sinclair to tweet: “Talking at the bedside with comatose patient, not sitting down with family. Not necc standard palliative care.” When the doctors corrected their body language and sat down to have eye contact with their patients, he nodded approval: “Much better now the doc is sitting down.”
Likewise, when chat participants inquired if a palliative doctor was the same as critical care doctor, Dr. Sinclair made sure to clarify that they are different, but should overlap for best care.
Every aspect of the patient, family and doctor interplay was exposed, warts and all. In some cases, a clear lack of privacy (HIPAA) loomed: “ctsinclair: ICU’s with open bays. SO tough to have privacy.” Ellen Richter, a nurse participating in the chat echoed this: “Sometimes in a crowded busy ICU theres nowhere to take family to discuss dying & its tough.”
One of the biggest issues to be highlighted was the lack of certainty from family members about what to do regarding end of life care of loved ones. Dr. Sinclair said it best:
ctsinclair: The family members key phrase “I dont know” Uncertainty is the biggest enemy in ICU decisions
This prompted a flurry of recommendations around the chat room to put into place medical directives upon becoming an adult: “renee_berry: Advance Care Planning should be a standard for quality care, #achievable rather than current state “in a perfect world.” Nurse Richter also underscored this point by noting that the ICU environment is “so sterile,” it isn’t the best environment to broach this emotional topic among family. Others concurred, noting the burden placed upon family to sort things out on their own.
Extending Life...or Prolonging Death
The second clip focused on the conflict between providing all health care measures for extending life at all costs vs. balancing quality of life with limited time left. Dr. Judy Nelson is interviewed in the film, where she admits, “it feels more difficult to stop something that’s already been started.” That implicit momentum was a bit of a revelation, as it revealed the doctor’s feeling of pressure of what Dr. Sinclair termed “clinical inertia.”
This issue was further magnified when one patient was quoted as saying, “I never want to be on life support,” while his family responded, “we’re not ready to stop life support.” During these emotional moments, some of the health care professionals on the chat applauded the efforts of family to emotionally connect with patients (e.g. singing at bedside, touching of hands, etc.). The chat then became instructive on the type of emotional comfort that could be given to provide enhanced care. It was also fascinating that the film allowed viewers to see how families decide these issues (e.g. in one case, where family members voted their opinion).
Adding to the uncertainty of what do is Dr. Mann’s admission in the film that, “People surprise me all the time.” That statement spurred Dr. Sinclair to ask about recall bias. Again, such commentary throughout the discussion forced Twitter chatterers to think more deeply about what was imparted. Getting to the heart of the matter, @doctorfisher commented: “fear of “imposing” sometimes prevents us from giving families our opinion, the very thing families sometimes want from us.” Indeed.
Some of the participants were wondering how the patients selected for this TV special might lend a slanted portrayal of the ICU environment. @DonaldHTaylorJr noted that ,”83% of US deaths to age-eligible Medicare beneficiaries,” yet the first two cameos featured patients who were much younger (~40s to 50s). This might tend to skew one’s perception of typical end of life situations.
There seemed to be almost an aversion to a discussion of palliative and hospice care options. For example, when doctors in the film mentioned stopping treatment, it was rarely followed by saying what is initiated.@doctorfischer spotted this trend right away,”When we ‘stop’ one thing we always ‘start’ another, shifting the focus to aggressive relief of suffering.” Notwithstanding this, the doctors in the film were exceptionally candid and even admitted their biases and how they try to adopt processes to limit their intrusion.
What was clear from the pain of families going through these decisions was best summarized by @LZeefe: “Letting go is the hardest part. Education important for pt/family on quality vs quantity of life.”
The Great Uncertainty
In this vignette, a patient undergoing a bone marrow transplant was featured. This was a good example of a patient undergoing serious treatment, with a good deal of side effects, in the short term with the goal of ultimate recovery. This is known as the Double Effect (see Wikipedia->http://bit.ly/cjHO8u). But, that is not how things went for this patient, even with an additional transplant. He was enduring quite a physical journey and looked completely exhausted. He was recounting his battle against cancer, baring his soul while seated in the hospital hallway. Our Twitter chatters noted that and again wondered about his privacy and the respect for his condition.
As the grind of the physical battle this patient waged on, @DONALDHTAYLORJR asked, “biggest question as I watch is what does informed consent actually mean? Can people consent?” While the effects of the disease were plain to the naked eye, the psychological trauma was not calculable. The patient was still raging against the disease, but at what psychological cost?
The emotional cost on families was brought into focus with the wife of a patient named Albert. She stated in the film, “Why give up? What’s that gonna do?” While this would have been a perfect opportunity to discuss other options, the film maker never broached the idea. Dr. Sinclair observed, “Tough to make arguments about that without reframing giving up.”
Dr Grosskreutz, another doctor interviewed in the film, was adamant that, “there was always something to do,” leading me to wonder in what situation would she find hospice and/or palliative care appropriate. It was as though the doctor would take death as an affront to her professional credentials. The chat group recognized that, as @DonaldHTaylorJr pointed out,”Palliative care is not ‘doing nothing’ But large cultural education is needed on hospice and palliative care.” That is, the word hospice was said once during the film, and palliative care not at all. It is an option, but there was no champion to raise it to the fore. Rather, there were two patients who were taken home, but no details were disclosed about what care they received at the end of their lives. I suspect this likely raises more anxiety in the general public about end of life matters because it is curtly dismissed.
Talking About End of Life
In this segment, we saw Dr.Osman wanting to clarify a patient’s end of life wishes which appear to have changed. However the body language appeared to give the physician an unfair advantage. Dr. Sinclair noted during the chat, “Doctor is leaning over patient asking about treatment goals. Body language dictates who has power. Sit at eye level.” For #facingdeath chat participants, Dr. Sinclair’s references to the body mechanics involved in communicating with patients conferred a great deal of insight.
Complicating the patient’s plight involved with Dr. Osman was the patient’s girlfriend who was not the medical proxy. It was the patient’s sister who held that role. Dr. Osman conferred with the patient’s girlfriend, stating she thinks the patient was going back and forth, but wants to do what is right. This prompted Dr. Sinclair to rightly inquire, “Is he going back & forth, or are questions being framed so that he wants to do whats “RIGHT?”That level of nuance added through the Twitter chat really allowed participants to critique the dynamics underway at bedside.
The patient stated to Dr. Osman, “I want everything.” Our chat moderator stated, “I want everything [is] the most powerful phrase that is often the not always well informed, born from uncertainty.” Finally, in the midst of this patient’s decline, Dr. Groopman admits that continuing life saving treatment has its drawbacks: “you risk amplifying suffering.” His colleague, Dr. Malone echoes this sentiment as well: “stopping therapy almost means that we acknowledge that death is near.”
One patient in the movie was described as having endured the first line treatment, but upon returning home had not walked since. Dr. Sinclair pointed out for chatting particpatants that, “Functional prognostication is as important as mortality prognostication.” At that point in the film, the doctor begins to lay out other options, including going home and hospice, but recants just as quickly saying “or not.” The theme that keeps running through this video is that suspending aggressive care is somehow equated with doing nothing, and that is a disappointment.
Modern Medicine’s Trade Offs
The sister of the patient who was earlier described as “going back and forth” on his wishes for end of life care confronts the doctors and asks point-blank, “Is my brother dying? I need a straight answer.” Dr. Nelson then clearly answers the sister, confirming that he is indeed dying. When interviewed sometime later, Dr. Nelson states in the film, “The availability of the therapies has created a fiction that we can orchestrate this one way or another.” But the doctor does concede that the existence of technology adds to a doctor’s pressures.
This is the point in the film where two of the featured patients are described as having been released home. In one case, Dr.Osman seemed particularly unhelpful, “we could do everything to get you back home, but the bleeding could start again.” So what are the options? No details on their end of life treatment is provided whatsoever. @DonaldHTaylorJr responded in his tweet, “They really need a follow up show….these are what the other choices look like; concurrent pall, hospice.”
Given the depth of the subject matter, the high caliber of the moderator (@ctsinclair) in guiding the Twitter chat, and the superb quality of the film from Frontline, all the ingredients for a compelling and illuminating discussion were assured. If the producers of the film had been listening, they must surely know that we want a sequel dealing with hospice and palliative care in a straight-forward manner. Whether that happens or not, it is clear that this mode of learning sparked interest, passion and greater discussion. We certainly faced up to this health topic.