Extracted Page: http://www.pallimed.org/

by Kyle P. Edmonds, MD

For those of us in the Hospice and Palliative Care field, the wrenching decisions asked of patients and families by modern medicine are a daily reality. On our consultation service, as I know happens on many others, we are often asked to become involved in determining the plan of care for those patients who have been or will be ventilator-dependent. On any week, we may round on a patient and family who are looking at the uncertain future of a percutaneous gastrostomy with tracheostomy and a long-term acute care attempt at ventilator wean. As they are considering their options of facilities, families often turn to us and ask “who will help us with these conversations there? There will be a palliative care team, right?” The answer, of course and unfortunately, is “no.”

Local San Diego reporting nonprofit inewsource has produced a fine series of articles, videos and vignettes in their series Impossible Choice looking at long-term care for patients who require high-level support Their reporting has been featured on PBS’s NewsHour with Judy Woodruff. According to their reporting, even Joan Teno (@JoanMTeno) “was surprised to learn California had such large concentrations of people living on life support in nursing homes.” Nationally, Teno “found that on a given day, about 13,000 people, or 1 percent of these nursing home residents, are kept alive by a ventilator or tracheostomy and a feeding tube. One-fifth are in California.”

For reporter Joanne Faryon (@JoanneFaryon), the impetus of this story came almost a year ago with her investigation of the troubles at San Diego Hospice when she became aware that there were places that healthcare workers referred to as “vent farms.” She state that she saw long-term acute care facilities (hereafter referred to as “LTACs”) as an “important part of the [hospice] conversation” and a place where the reporting “crystallized.” In her behind-the-story videos, she describes walking onto the floor of an LTAC and being told “Don’t look in the [patient] rooms, these are their homes” and being struck that these long-term patients did not look “comfortable” but were rather contracted, contorted and in need of constant care.

“That’s the thing about Villa Coronado;

it’s a lot about who you used to be.”

Much of what we do in modern medicine places patients and families in impossible situations. A husband named Steve is described in the first article as having been told in the hospital that his wife should go home on hospice but then hearing from another physician who “offered Steve hope instead. He said Rafaela was a ‘fighter.’ ‘He said, ‘You have to take one day at a time. I can give you information based on studies, based on statistics, but every case is different,’’ Steve recalled.” That moment, so familiar to all of us, is described as: “It’s what he wanted to hear. He looks back and knows he made an emotional and not a rational decision by refusing hospice, but as a husband who didn’t want to lose his wife, he was given an impossible choice.” Another patient’s mother describes the position of decision-maker: “I think it’s a horrible position to be in, to make the decision for someone else. Especially someone else who understands what’s going on.”

The way that patients and families are guided through these decisions has the potential for long-term consequences, including complicated bereavement. As the article points out, some of the thought-leaders on this topic here at UC San Diego recommend (pdf) employing different communication and decision-making styles depending upon the assessed level of patient or family coping. Enhanced communication skills prevents conflicting messages as pointed out in the article by Dr. Lawrence Schneiderman, family physician and bioethicist “The doctor says, ‘Gee, this won’t work. Do you want us to do it? That’s just absurd.”

As a caregiver in this impossible situation, Steve describes that “His days feel like an endless loop, and just when he thinks he’s used to it, something or someone, maybe an old friend who asks about Rafaela, sends him into a freefall.”

“Slowly coming back”?

The family members of these patients are treated well by Joann Faryon who describes them as “[having] infinite hope in the bleakest of circumstances, seeing small gestures — a grunt or the batting of an eyelash — as signs the person they love is slowly coming back to them.” In these difficult situations, I often think of the finding of Kuehlmeyer, Borasio and Jox in the Journal of Medical Ethics that those family members who did not know the end of life wishes of their loved one interpreted nonverbal behavior or the very act of surviving as a “will to live.” As the article describes, “Hoping for a miracle in the face of a grim prognosis, circumstances cajoling them into magical thinking, they stand by the bedsides of wives and husbands, fathers and daughters, waiting.”

With many of these patients severely impaired but in minimally-conscious states (MCSs), they show inconsistent responses to those around them. Occasionally opening eyes or grasping at objects. As I watched Dr. Jay Rosenberg describe this all-too-common situation, it brought to my mind the reinforcement schedules where the most lasting behavior change is created by a schedule where reinforcement is provided sporadically and unpredictably. For Nancy, the mother of one of the patients (who has spastic quadriplegia and is not in a MCS), she describes her daughter’s inconsistent responses as “evidence Maria continues to find joy in life. ‘I cannot pull the plug on somebody like that who expresses the fact that they’re not ready to give up.’”

In another, related, way these inconsistent responses are subject to confirmation bias, described well here in relation Steve: “But he insists she isn’t like the others on the unit who lie in bed all day staring into space. ‘That’s not my wife. Most of the people on subacute do it. My wife doesn’t do that.’”

Ways Forward

Many of us, myself included, would love to approach these LTACs with an agenda based primarily in our sense of what we would want. I find bravery, however, in the statements of the families in these articles that “I would never want this for myself, but I know that he/she does.” I also find comfort in the fact that the LTAC featured in the story is part of a health system that employs advance care planning specialists, “Sharp is the only local health care company that has an entire department dedicated to helping people navigate end-of-life issues.” The specialist interviewed for the second article, Teresa Vaughn, “doesn’t let the negative term ‘death panel’ get in the way of her work. She embraces it. Deciding how you want to live and how you want to die should be something everyone considers because everyone dies.” Dr. Ken Warm, on the medical staff of the LTAC, states that he quickly discovered that being seen as having an agenda worked at cross-purposes: “I saw (early on) that if I tried to give my opinion that we shouldn’t go on, that made them less able to have me be a source of information.” So he’s described as being more patient now and guiding these families over time.

It is important for those of us who are relatively healthy to keep in mind the lessons of prospect theory, which demonstrates that we are likely quite bad at predicting what we will want when we are in less healthy states (case-in-point: high spinal cord injury and life satisfaction). So, whether you or I shudder (and I do) at the thought of being in an LTAC, the same may not be true for the future “me.”

In my estimation, I see the ways forward as:

Take-away

Joann Faryon says “I walked away thinking, ‘I don’t know what I’d do if I were [these families].” I’d like to think that I do, but, as I point about above, I’ve got a good chance of being wrong.

In reviewing these excellent articles and accompanying website, I was most struck by (as a committed logophile), the power of a certain phrase. I’ll let the article speak for itself:

“The first time Steve hears the words life support in connection with Rafaela is during our third interview. “I have never heard a physician, I’ve never heard a nurse, I’ve never even heard a family member on subacute use the term life support. I think we all kind of know it in the back of our minds. We just don’t want to acknowledge it,” Steve said.”

“The mind is powerful. It protects you.”

Kyle P. Edmonds, MD is a palliative physician with a special interest in social media, health system reform and clinical bioethics.

Image credit: Screenshot from http://impossiblechoice.org/

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