A Sign of Changes Ahead?

A recent New York Times article “Coverage for End-of-Life Talks Gaining Ground” (found here: http://www.nytimes.com/2014/08/31/health/end-of-life-talks-may-finally-overcome-politics.html) sparked some ideas we thought we would share with you. Below is the Letter to the Editor that we sent in response. What are your thoughts?

As an agency providing palliative care social work interventions in Colorado state, we daily experience the benefits of planning prior to medical crisis. These advance care planning conversations allow for hope, relief of anxiety, and support of a patient’s loved ones by starting from a place of positive intent: Let’s always continue to hope one’s health will improve, but let’s also map out potential medical situations and allow people to choose what would be acceptable paths of care. What we see, generally speaking, is that naming aloud the possibilities reduces their stranglehold and power on people’s fears and imaginations. In the sacred space formed during these conversations—which include involving the patient-defined family—these are times of great intimacy, faith and humor. We get to focus on what makes a person his- or her individual self, and work backwards from there in order to adequately discuss what lies ahead rather than increase fear of the unknown.

A few important points we beg your reader to consider:

• Appropriate reimbursement and allotment of time allows professionals to truly provide informed consent. A patient always has the right to opt-out, of course, but what’s more important is that this gives those who are looking for more thorough information about what to expect in the weeks/months/years ahead the opportunity to do so.
• The photograph that accompanies this article unfortunately gives the impression that Ms. Zebrowski is uncomfortable or cornered into the conversation, which we expect misrepresents her experience and relationship with Dr. Hinterberger.
• While this proposal is certainly a step in the right direction, we couldn’t agree more with Dr. Diane E. Meier of the Center to Advance Palliative Care (CAPC) that these conversations are part of a process over time, an ongoing discussion as the medical landscape one faces changes. To assume that a one-time conversation and reimbursement will be sufficient flies in the face of what we know about medicine as well as human nature.

The danger here is to further polarize this issue rather than to grasp what is truly at hand. These proposed measures mean allowing physicians and allied professionals such as social workers to provide detailed information and facilitating meaningful, humanizing conversation to more adequately prepare for the future.

Returning to “Why”: Lessons Learned in the Shed

Like all organizations interested in maximizing potential and remaining open to opportunities, we recently had a powerful “woodshedding” weekend here at The Holding Group. For all jazz enthusiasts out there, you’re aware of this term – adopted from the idea of taking an axe to the woodshed to sharpen, it means taking your instrument to an isolated spot in order to dedicate uninterrupted time to your craft. With deep gratitude to our families and partners, to our business-life guru Rolando Salinas and to one another, we dedicated time and space to our craft to reconnect with WHY we’ve come together to create this agency. We needed to put new words to our passion, to hone our intentions and put some structure to the culture that underlies The Holding Group.

What we ended up with, in addition to myriad powerful “eureka!” moments, is the fundamental root of our existence:

We believe that people know what’s best for them and that they deserve to be informed, empowered and supported.

Our passion comes down to this simple, yet utterly complex, notion. We find that it can be hard for our clients in the midst of a serious illness to recall a time before the illness began (or took over), and yet this means that they no longer feel like experts about their needs. A significant part of our mission is to support a return to feelings of confidence, control and mastery. Again we turn to our Heroes for inspiration, as we realize that there have been many before us who honor this same concept and hold it as a core value. What a joy to realize that we’re a piece of a larger whole with a unique perspective and contribution.

Our woodshed time yielded significant personal lessons as well, which is expected given the intimacy of our work and aspirations. We all have the ongoing chance to break away from our “storied selves” in order to realize the many dimensions we all encompass. It’s like a magic trick or ironic riddle: we can break out of the corner we paint ourselves into as soon as we realize that we’ve painted ourselves into a corner. The narrative of our lives is a work in progress, and one that we daily write ourselves. There is unlimited power in humor, relationships, honesty, and the unsaid – how vital it is to challenge our assumptions about ourselves and one another in order to reveal boundless potential. Above all, we are renewed in our gratitude for the opportunity to serve.

The Way We Get By

Over the past several weeks, I’ve been working with a woman in her 80’s who – until a recent cascade of medical events – has enjoyed phenomenal health. Having taught aerobics for years, and being admittedly much more active than the majority of us (OK, I’ll just speak for myself), Jill is now understandably a bit stunned by her increased dependence on others and loss of confidence; she reveals a newly-acquired timidity in relation to her physical self. As Jill and I discussed her recent medical course and began to outline the new landscape she must now learn to navigate, she shook her head and said: “So, I guess I’m not invincible?”

As a courageous, independent woman whose relationship with her body and surroundings has been one of ability and grace, how could Jill have been expected to understand how this time would feel until she experienced it firsthand? And yet I’ve overheard conversations in which professionals wonder in bewilderment how those in their 80’s or older have not expected to decline, or how those faced with a serious illness don’t act quite as expected, and are quick to ascribe it broadly to denial.

A quick review of the roots of “denial.” Sigmund Freud first identified the concept (later elaborated upon by his daughter, Anna) as an unconscious defense mechanism, or a way to protect oneself without any intention or awareness. In order to regulate the environment around us, we simply do not recognize stimuli or data that we cannot afford to integrate at a particular time. Without consciously recognizing it, we filter the world into messages that can be absorbed and those that cannot.

In other words, denial is an integral, behind-the-scenes part of our everyday lives. Denial provides us all with the ability to move forward, to get out of bed each day. Within the medical setting, it feels to me as though the label of denial is most typically employed as a device to shame or ostracize. When I hear a physician or other clinician lament over a patient’s denial, I translate this to mean, “I’m frustrated that this person hasn’t accepted what I’ve told them so we can move in the direction I believe to be appropriate.” This undermines the process by which a person, with the proper psychological and concrete support, may eventually come to recognize the gravity of a situation. It happens on no predefined timeline, and necessarily looks different for each person.

So, has Jill lived in denial by not anticipating the various ways in which she might become seriously ill? I would argue that the question should be instead: what internal and external tools does one have to piece the world back together once denial is no longer utilized? Jill has managed to transform the recent recognition of her invincibility into meaningful action and planning in regards to her healthcare wishes, and that – to me – is the most one can ask for.

A Subtler Hero Emerges

In the spirit of this season of giving thanks, we at The Holding Group are grateful for our ever-growing list of personal and professional heroes. We have heroes locally – from our various community partners to the clients we serve – and across the country and globe. This recent column by Jane Brody in the NY Times, “Aiding the Doctor Who Feels Cancer’s Toll,” on the role of “contemplative care” in the practice of medicine exemplifies the thoughtfulness of one of our heroes, Dr. Diane Meier. This article is about the toll that practicing medicine takes on physicians who feel they are in the ultimate Catch-22: in the very advanced stages of a patient’s illness, they have to either provide treatment they know will not be successful or “abandon” that person (towards whom they likely feel a deeply personal connection). Through this lens – with so much power and technology at their fingertips, coupled with the pressure to perform miracles – they are in an impossible position.

And yet, contemplative care asserts the need to take a different approach, a new perspective.  It teaches us all to think and sort through our intentions before we just act; as Dr. Meier put it, “Don’t just do something, stand there.” Until this is practiced to the point of becoming routine, it takes both guts and trust to stop, think and ask: “is this treatment truly serving the human in front of me?” The irony is that without creating this space the voice of the very people physicians are trying to protect gets lost.

There’s no need to fear this age of practicing smarter medicine that is guided by evidence, efficiency, and efficacy; it is the epitome of humane. Physicians can maintain the hope in treatments they provide by setting realistic expectations and including appropriate measures such as palliative care and interdisciplinary team members – read: social workers and spiritual support! – from the outset of diagnosis.

Our heroes, like Dr. Meier, don’t have all the answers. In fact, one characteristic of our heroes is that they ask questions in order to inspire solutions. In this case, the question is: “how can we think differently about the care we provide?” Being a hero is no easy task, and chances are that one’s heart has broken a bit to become a hero. We know that heroes work tirelessly at their visions of doing the Right Thing. But, to be clear, our heroes are not on pedestals – they are humans, here on the soil with us, who are not perfect immortals but rather humble, wildly intelligent, collaborative and ever-curious. Thank you to our heroes, near and far, for asking the questions that you do.

Bravery

Have you had that experience when you notice – in looking up from the daily minutia – recurring themes, patterns over a day or a week?  A revamped déjà vu? In my work I am frequently struck by how relentlessly brave people are. And by brave, I don’t mean void of fear – I mean just the opposite: able to articulate doubts, questions, concerns in a way that leaves one exposed and vulnerable, yet definitively lighter.

For me, this bravery was recently exemplified by something that I suppose I’ve begun to take for granted: the power of documentation. Last week, I met with an elderly woman with an advanced cancer and helped her complete paperwork. We discussed this role and her medical wishes with the family members she appointed to this position, her adult children. With astounding courage, she also completed her “” with them present, a document that guides nuanced conversation around preferences as one approaches death. This is also a woman who, through experience with her father’s cardiac illness, felt passionately against being resuscitated. For those of you who aren’t aware, in some states (like Colorado), that wish needs to be documented on a specific form with a physician’s signature as well, which makes it a formal medical order. Although weak at this point, my client signed that document with flourish and purpose.

Yesterday, she recounted for me the profound relief it gave her to have completed these documents. Unaware of much of her history, I asked her to explain further and was humbled by the answer.

When my client was first diagnosed several years ago with her cancer, she had planned a dinner with her children to have a thorough, open conversation about the illness she was facing…but the dinner never happened. That moment passed, life went on like it tends to – new crises arose, babies were born, television seasons passed  – and it no longer felt relevant. Yet the missed opportunity continued to grow and haunt her. In her family, as in many, it took a recent noticeable medical decline and hospitalization to force the issue again…and this time she was really “ready”.  In a way I’d never heard before, she was able to illustrate the simple yet profound burden that had been lifted.

Perhaps this bravery is an attribute forged by the process of dealing with an advancing illness, as our hopes and focus are inevitably shaped by this new landscape. In the midst of a crisis, many people surprise themselves by how they rise to meet the unfamiliar. What happens less frequently is that we take the time after a crisis has passed to notice how it has reshaped us.

We talk frequently at The Holding Group about how our job is to ask hard questions and then get out of the way of the answers and conversation that naturally follow. How true this turns out to be.