When Care Becomes Virtual

I was using a weight machine at the gym yesterday when an abs class was ending. Participants must’ve been discussing social media, because I overheard the teaching saying, “I have four Facebook friends who died, and they still have pages.”

I didn’t hear what preceded that statement, or anything that followed. But the teacher’s words were on my mind this morning when, with two colleagues from the Community Ethics Committee, I met with social workers and other medical staff at Beth Israel Deaconess Medical Center. The subject was social media and the wariness we felt about its place in serving the best interests of patients. (The CEC’s report on Social Media, from 2010, has needed an update essentially since the day it was published; you’ll find it here.)

The idea that someone might be survived by his Facebook page hadn’t occurred to me before, and now I can cite at least one medical professional who will never experience a patient being survived by their page. This medical professional reported, with a certain pride, not being on Facebook or any other social media, and having no intention of ever communicating with a patient that way.

There’s something to be said for that, as the CEC determined in its 2010 report. The gold standard in patient care is face-to-face communication, and always will be. The phone is not as good, but it’s OK. Same with email, for certain exchanges. But Facebook? Twitter? Linked-In? Carepages or personal blogs?

I think the Facebook-averse carer is smart; she’s been in practice a long time, and her methods of communication in the healing arts seem to be working, even in an time when new communication avenues emerge with frequency.

And yet, except for a privileged few, physician-patient face time is decreasing, and social media present new means of addressing what is lost in that trend. Twitter, Facebook and the rest present unique challenges and shortcomings, and yet they are unquestionably connective for increasing numbers of people.

The Wall Street Journal recently quoted a physician who discovered from a Facebook post that her patient was waking up repeatedly at night to use the bathroom; the patient had neglected to mention this during a physical exam, and the information led to a phone call and prescribed treatment. Another physician in the same story called a patient to set up an appointment after learning via LinkedIn that the patient had been in the hospital.

And in Canada, amid disappointing participation in an H1N1 vaccination program, an investigation of online media discovered widespread anti-vaccination dialogue. This was an important piece of information in promoting vaccination, and was only discovered through smart use of social media.

Thaddeus Pope, a professor of law and specialist in the ethics of end-of-life medical care, is a proponent of social media’s potential in selecting substitute decision-makers, locating SDM unbefriended patients, and for promoting and facilitating both advance care planning and public health.

And just this week, the med student Brittany Chan makes a compelling case on KevinMD.com for using Twitter to “stay up to date on news and literature, ... share ideas and learn from others ... (and) help patients.” 

“As medical professionals, we can help disseminate accurate health information on the web,” Chan writes. “Twitter provides a great avenue for physicians to steer people to reputable websites for health information, dispel myths, share helpful articles, and educate people on medical issues.”

I recently watched a TED lecture on social media by the psychologist Sherry Turkle. It was the second such TED lecture by Turkle, the first coming in 1996 when she was on the cover of Wired magazine touting the life-changing potential of new technologies. My wife is a psychologist, too, and it was a patient who referred her to Turkle's latest lecture. I sat down and watched it with her. And one thing Turkle said stood out in explaining why social media might be so compelling a subject to a mental health professional: These devices, Turkle said, are so powerful that not only do they change what we do, but they change who we are.

Turkle tells a powerful story. But as she tells it from a stage to a large audience, this irony is just as powerful, the distracting way she looks back and forth from an earnest connection with her audience to the monitor screens that keep her place in the story. She relies heavily on them, and I note that not in criticism but in recognition of the challenge of pulling one’s attention away from the screen.

These devices, so immediately and globally connecting, can be equally disconnecting and isolating. As an 18-year-old told Turkle, sometime soon, he was going to need to learn conversation skills.

"But there are 50 ways to use something like Twitter to make your world, or the world of those around you, a better place,” writes Dr. Bryan Vartabedian, who blogs on medicine and social media at 33charts.com. “YouTube’s potential application in health care is limited only by the imagination. While no one has to use any of these tools, believing that Twitter is only a place to share what you’re eating for breakfast is to live with your head in the sand. We can’t value what we don’t understand. And we’ll only understand what something can offer by poking at it and trying it in different ways. The world is increasingly networked.  And when you find the right place to connect, share and create, you’re likely to find value."

Twitter & Understanding Shared Decision Making

In Twitter dialogues about end of life care and other areas of medical ethics, I tend to eavesdrop, rather than participate. There are quite a lot of such dialogues and they attract a dedicated group of medical carers whose exchanges are moving in what they reveal of the dedication to serving the best interests of patients.

“Medicine exists to serve the goals & needs of people, or at least it should,” the palliative care physician Diane E. Meier recently tweeted. “Starting with what matters to the patient is key.”

I often find the chatters to be more interested than interesting, but sometimes a chat provides a view into the real value of social network in medicine. That was especially true recently in a Twitter dialogue using the hashtag #SDMchat, the acronym for shared decision making, a medical model foundational to the palliative care specialty.

As with so much on Twitter, you need to muddle through foreign acronyms, abbreviations, incomplete sentences and head-scratching syntax. The upside is, even at its worst, Twitter keeps even the verbose to 140 characters. Twitter it is blissfully free of monologues. And, as evidenced by the recent #SDMchat, 140 well-used characters can be powerfully educational.

Dr. Meier (@DianeEMeier), director of the Center to Advance Palliative Care, collaborated in the chat with Renee Berry (@rfberry), palliative care advocate and digital media guru, and Martha Hayward of The Conversation Project (@ConvoProject).

Understanding and common language are crucial in ethical thinking, so the exchange distinguishing hospice care from palliative care was especially useful. As Meier tweeted, “All hospice is #palliative care, but all palliative care is not hospice.”

Why does this distinction matter? Consider that many physicians do not know the difference. “I think it's important to remember, you may have to remind your doctor that palliative care is for anyone with serious illness,” Berry tweeted. 

“Important for people to know that many docs do not know diff betw hospice and #palliative care- u have to educate them!” Meier added, and later:  “In #palliative care, the visit starts w/ ‘Tell me about yourself. Your family.’ The real issues bubble to the top” and 

“(Palliative is) “person centered - Don't ask what's the matter with me, ask what matters to me!” 

That last one got retweeted like crazy.

The #SDMchat produced many other tweets that packed a lot into 140 or fewer characters. Here’s a sample:

“Hospice helps you live well at end-of-life. Palliative care helps you live well during any illness.” (@AskCrossroads)

 “Hospice care IS palliative care, it's just that a life expectancy is measured in months, not years.” (@JenMarsh2)

From an exchange defining shared decision making:

”Comfort/palliation begins with patients preferences.” (ConvoProject)

“Palliative care specialists demonstrate leadership in shared decision making- empowering patients faced w/complex care decisions.” (@rfberry)

“#Palliative care folks are leaders in SDM-As an Internist I've learnt my words frm them2practice real patient centered care.” (@thinkalot)

“Shared decision making is a skill that takes practice, involves great attention to active listening & being present.” (@rfberry)

“SDM in palliative care can help everyone stop guessing and start discussing!” (@IMDFoundation)

“SDM is best chance of "no regrets" by dying person and the survivors of loved ones.” (@ChrisAug89)

And best resources for people considering palliative care:

“Talk to your family first. Use our ‘Starter Kit’ to start these convos” and “ Next, talk to your doctor. Use our guide” (@ConvoProject)

“Ira Byock's latest book "The Best Care Possible" -- great insight on shared decision making & #palliative care” (@IMDFoundation)

“GetPalliative is one of my favorite resources for anyone considering palliative care.” (@rfberry)

“for ppl w/cancer @ASCO's @CancerDotNet has doc-approved info on palliative care” (AmandaBinDC)

“Obsessive attention to language in palliative care is crucial to meeting people where they are.” (@rfberry)

Read the full transcript here. 

Right to Life Debate Moves to End of Life

The Associated Press reports that "a battle is brewing at the Texas Legislature among right-to-life groups, but rather than debating when life begins, they are fighting over the rules that govern the end of a terminally ill person’s life." See the full story here.

And see the Community Ethics Committee's report, MEDICAL FUTILITY: Strategies for Dispute Resolution when Expectations and Limits of Treatment Collide.

Understanding MOLST

As Massachusetts did not long ago, Connecticut soon will launch its MOLST program with a pilot project.

Don’t know what MOLST stands for? Maybe the following will help. It’s from Paul Drager, J.D., of MedEthics Consulting of New Britain, Connecticut:

 “Traditional advance care planning, including living wills and appointment of a health care representative can be a starting a point for end of life discussions. In particular, Medical Orders for Life-Sustaining Treatment or MOLST complement advance directives. Traditional advance directives look to the future, but they are not actionable medical orders.  They are appropriate for anyone of legal age regardless of their medical condition. MOLST, on the other hand, is aimed primarily at persons, regardless of age, at the end-of-life (seriously ill patients with life-limiting advanced illness; patients with advanced frailty; patients who may lose the capacity to make their own health care decisions in the next year; persons with strong preferences about current end-of-life care).  MOLST is intended to encourage and facilitate discussions between physician and patient at this point in a patient's healthcare continuum.

“Prognostication is often an issue.  The key question to be answered by any physician, with regard to MOLST, is: Would you be surprised if your patient were to die within the next year?  If the answer is "no" then the intimate and comprehensive discussion on end-of-life care needs to be initiated to clarify the patient's wishes.  For example, the New York State MOLST allows patients to indicate that they want all resuscitative measures, no resuscitative measures, or resuscitative measures to be undertaken on a time-limited basis.  Importantly, that document then becomes an actionable medical order which is to be followed, and accompanies patients across all healthcare settings.  Conceptually, MOLST is an out-of-hospital 'do not resuscitate' form and a medical order to be followed regardless of a patient's healthcare setting, but it is more.  It should be reviewed on a regular basis (about every 90 days, but failure to do so will not void it); healthcare providers still have an affirmative duty to make an assessment; and EMS personnel must honor it.

“The MOLST paradigm recognizes that healthcare for any given patient is a team effort.  While MOLST discussions can take place with members of the healthcare team, the order itself is signed by the physician (however, some states allow a PA or APRN to sign the order) AND the patient (or their surrogate). 

“Another key to MOLST is that it is patient centered rather than physician centered.  It encourages, and in some states now requires, that the difficult discussion takes place between the physician and the patient.  MOLST seeks to achieve patient preferences and goals in end-of-life care.  In doing so, the MOLST discussion provides context by discussing values, beliefs and goals of care; identifying core patient values and beliefs; determining goals of care; and documenting the conversation.

“It is noteworthy that in 1995, a study highlighted a disconnect between patient preferences concerning end-of-life care and the care provided by their physicians. The Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment (SUPPORT), was a multimillion dollar, multisite investigation of the process of dying in American hospitals, funded by the Robert Wood Johnson Foundation. The majority of physicians did not know if their patients had Advance Directives, or did not follow them.  Little has changed.

“There are still significant barriers concerning the Advance Directive discussion between patients and physicians.  Many physicians are overworked, lacking time for "discussion", and believe that their patients are not receptive to discussing Advance Directives.  This underscores the need to address patient barriers and encourage a change in medical culture to address emotional and personal patient issues so that their goals of care are met.”

Is CPR Always in a Patient's Best Interests?

A headline from this week's news: "Elderly Woman Dies after Bakersfield Nurse Refuses to do CPR."

The headline you won't likely read in the news: "Elderly Woman Remains in ICU on Life Support and Dying Slowly Three Weeks After Non-Therapeutic CPR"

Which story is more troubling to you?

See our op-ed in The Guardian. 

That op-ed was written prior to a statement released by the bereaved family of the Bakersfield woman, Lorraine Bayless, and providing important context for the nurse's actions. (Credit: Ventura Country Star and Associated Press):

Our mother and grandmother was a remarkable and intelligent woman whowas blessed to have a great life of 87 years. It is the wish of our family to honor and celebrate her life at this personal time. Like so many Seniors, it was our mother's wish to live independently. She was fully-aware that Glenwood Gardens did not offer trained medical staff. Even so, she personally-selected the senior living community, and our family has come to know the staff and been very pleased with Glenwood Gardens as her home. It was our beloved mother and grandmother's wish to die naturally and without any kind of life-prolonging intervention. Our family respects the right of all people to make their own life choices in such cases.

We regret that this private and most personal time has been escalated by the media. Caregivers, nurses and other medical professionals have very difficult waters to tread in the legal and medical landscape of our country today. We understand that the 911 tape of this event has caused concern, but our family knows that mom had full knowledge of the limitations of Glenwood Gardens, and is at peace. We also have no desire, nor is it the nature of our family, to seek legal recourse or try to profit from what is a lesson we can all learn from.We wish to focus on our family at this time, and this will be our final comment on this personal matter.

- The Bayless Family

"Stories to Inspire a Peaceful Passing"

Writing about medical care at the end of life requires devotion to a quite literally vital subject in order to transcend the inconvenient fact that, while all humans die, few Americans want to think about it, much less read about it. 

So all credit to the pulmonary and critical care physician Lauren Van Scoy for having the imagination and fortitude to take on this task, one I’m tempted to describe as thankless, but that would miss the point of the pervasive gratitude in “Last Wish: Stories to Inspire a Peaceful Passing” (Transmedia Books). Medicine’s glory is perhaps in the cure, but is there a higher calling than the compassionate care of the dying?

“Last Wish” concerns the last decision you will ever make, and it’s one you only get to make it with foresight and luck. Otherwise, someone will make the decision for you; maybe someone you know and love, maybe not. It’s pretty much up to you.

So think of “Last Wish” as a hand to hold while you journey through difficult personal, emotional terrain. “Last Wish” is made of stories of those who’ve been through this before.

Some are stories of Van Scoy’s patients. Some are about patients of colleagues, constructed through interviews by Van Scoy. There are six stories in all, each uniquely compelling and beautifully written, and unpredictable. Negotiating that unpredictability, perhaps, reveals the real art of medicine, as told by a wise and caring practitioner. In these sometimes unsettling stories, you might be inspired to take responsibility for writing your own ending.

“Outside, Dr. Olson wondered how long it would take,” Van Scoy writes of Victoria, 79, her lungs riddled with untreatable tumors and unable to breathe sustainably on her own but with an extraordinary daughter able to differentiate between her own fears and uncertainty and what is best for her mom. “(Dr. Olson) had performed many terminal extubations and was amazed at how different each one could be. Some patients linger for hours after the ventilator is withdrawn. They’re able to breath on their own for a few hours, but eventually, the strength that allowed them to maintain their oxygen levels fades, and they succumb to a respiratory fatigue. Others go right away, as they simply cannot survive for any length of time without the ventilator. Dr. Olson wondered what Victoria’s body would do and then wondered which way would be best. Is it easier for the family if the patient dies right away so they don’t have to stand by and watch a long and drawn out decline? Yet, when it happens right after the ventilator is withdrawn, it might worsen feelings of guilt because the family sees a direct relation to their decision to take out the tube and the death of their loved one. Dr. Olson sometimes thought it was better if the two events were spaced out in time, but you could never be sure how any family will react to the passing of a loved one. It always seemed to be a little easier when the family had some time with their loved one after they were unveiled from the shroud of the ventilator. Dr. Olson hoped Victoria could breathe on her own long enough for all forty of her family members to say their goodbyes in their own time.”

Van Scoy has crafted questions to follow each story and engage the reader in thinking about values and wishes, and what she calls an “end-of-life planning compass.” A compass is a smart way to present such information, as direction is so easily lost when acknowledging one’s mortality. 

“Last Wish” is a valuable addition to end-of-life medical literature, and yet how you will receive it, or whether you’ll even bother to read it, might be predicted by your reaction to one scene in the book. Call it the sense-of-perfection test.

Like an aspiring singer standing exposed before a celebrity jury on a star-making TV series, Barbara is being interviewed, and judged, by two men deciding whether to pay for her wedding, when one man turns to the other and says, Does it get any more perfect than this?

Barbara is overcome by emotion with the realization that her dream of a wedding day is coming true. But here’s the test: How does it affect your sense of “perfect” to know that this lucky bride-to-be is being interviewed in her hospice bed.

If you think of hospice as a place where hope goes to die, an unfortunate but not uncommon misperception, then you might imagine any number of more perfect brides-to-be. And yet the joy in this patient’s story is uniquely connected to her own acceptance of her time running out. 

Barbara is terminally ill, will take an ambulance to her wedding, and there is no vow of lifetime commitment recited with limitless expectation. And yet she has love, dedicated care, and an heightened awareness of the moment. Hospice has added days to Barbara’s life, and life to her days. What more is there to understand? 

You won’t forget this bride. Or the motorcyclist. Or Patrick, his mom, and their highly individual approach to accepting what is taking place. Or the family who can’t let go, the one who can, or the God whose time clock they yearn to respect.

“Religion in medicine has always been a mystery to me,” Van Scoy writes. “The majority of my patients are deeply religious, but the way they interpret their religion can vary significantly. I puzzled over Sam’s response. To Sam, ‘letting God’s will prevail’ meant using science and medicine to its fullest and if she were to survive, it would be God’s work. On the other hand, some patients feel that using science and medicine is working against God, and that if a patient is fated to survive, it has nothing to do with what we as doctors can do. Those patients chose to remove the machines and ‘let God’s will prevail.’ I wondered about Sam’s interpretation as the conversation continued.”

In “Last Wishes,” Van Scoy captures a medical team's close attention to patient/family wishes, even when they disagree with it. With keen eye and ear, she describes both the strange and complicating aspect of the patient-physician conversation in which information is heard selectively and the way patients become a victim of poor nurse-physician communication.

In these six stories, trust emerges as important as hope, and sometimes as fragile.

Why this matters is captured well by Engage With Grace founder Alexandra Drane in the foreword to “Last Wish.” Drane writes: “Since we launched Engage With Grace, we’ve found that once the conversation starts and our thoughts and wishes are shared with those we love, then the system that intervenes to bowl over our intent stops being intimidating and we become empowered.”

“Last Wish: Stories to Inspire a Peaceful Passing” is available through www.knowyourwishes.com. Twitter: @knowyourwishes. Van Scoy is Chief Pulmonary and Critical Care Fellow at Drexel University College of Medicine and online editor with the national Coalition to Transform Advance Care (C-TAC).