Hospice Grows as Family Shrinks

Sometimes hospice workers are called honorary family. That sounds good to say after times of great intimacy during our demonstrations of what seem extraordinary efforts to bring needed care. These efforts illustrate what the family considers real evidence of fidelity, and even love.

But hospice is a business. And its workers are not family, even among themselves. Of all the reasons why hospice workers like me (or your music therapist or even your kind and gentle CNAs who wash you) are not even a proper substitute for your family, the most obvious is that we are not your family.

We hear a lot about the family these days from the conservative sectors of politics. “Focus on the Family”, Family Values, the family farm. So, it would seem that at least a half of the voting adult population would understand what I’m talking about here. Family, it seems to me, requires a blood tie, or an adoption-level intimacy of those who know you well and as long as you have known them. We hospice workers can never become your family, merely based on this period of truthfully shared intimacy during one’s dying, even if that process is stretched out to a year or longer.

I am part of a business organization, a network from which to draw on for very specific purposes that most users of hospice find highly beneficial. Once that purpose is finished, that the person-patient “in hospice” is discharged because they have died or are no longer eligible for this Medicare benefit, that relationship is ended.

You that way, we this way

William Shakespeare, Love’s Labour’s Lost, last line

Family — or extended family and close neighbors (the “Chosen Family Unit” in academic hospice lingo) — are where we find community. Networks have long been taking over community, seem a replacement for them, but Networks never can replace Community. Non-family businesses are mere Networks.

And schools, one of the three worst time-wasters — that also happen be destructive to community — are Networks.

Networks involve transactions, typically financial or service-based transactions. Think of the vague, interchangeable signifier “Commodities”, one of the consistently bitter-tasting words wherever it’s found in Shakespeare. Commodities involve business transactions.

Schools are simply big business, one of the biggest in America, and harmful to children when parents misunderstand this, and children go unsupervised. Children who aren’t protected from schooling — and afterward, television and computers — face these anti-community’s degrading effects:

Intellectual and emotional Dependency; Confusion from the avalanche of facts continuously paraded by them and heard from no more; the constant Ranking/competition of grades, tracking categories and standardized testing; Indifference to reality that can’t be long concentrated on before the Next Thing comes along; Conditional self-respect; constant Surveillance, including after-hours privacy invasions with “homework”.

Cf. John Taylor Gatto Dumbing Us Down, first chapter, “The Seven-Lesson Schoolteacher”. On television, see Jerry Mander, Four Arguments for the Elimination of Television. For computers, see Nicholas G. Carr, The Shallows.

At the neighborhood Italian restaurant, we saw our regulars settle into their customary chair at the bar or favorite table, open their reading materials or finish up work before their meals. The manager liked to say that these people were enjoying their Third Space, one habituated from pleasure outside of their home and work.

One family we called the Hairy Family, assumed their kids were homeschooled and seldom got haircuts to save the cost, because they ordered the cheapest things and left barely any tip. No one could be seated at their table afterwards until a thorough sweeping and mopping up. Once, one of us came in with excited intelligence about seeing the Hairy Family with a basket full of partially used items, looking for refunds at the Whole Foods Market’s customer service counter. And yet:

…

I have seen fishermen picnicking in the sun

I have seen them with untidy families,

I have seen their smiles full of teeth and heard ungainly laughter.

And I am happier than you are,

And they were happier than I am;

from Salutation, Ezra Pound

Another family were theatrical and sometimes would break into show tune songs during their dessert course to the delight of nearby diners and staff alike. During the lunch shift, on certain days of the week, we watched for a lady we called the Mad Shitter leave her business lunch table, as if On Cue, and head for the ladies room. Years before the non-glutin craze we were speculating about her undiagnosed or disregarded celiac disease.

As vivid as these memories feel, I have no interest today in meeting these customers, nor even my former colleagues from the restaurant. We came together for quite specific reasons and never learned much about either those we served or our workmates, even after going out for drinks. That goes especially for the couple of celebrities who dined there, as much as one questioned me about spiritual opinions (Caroline Myss) and however much I loved John Mahoney’s Krapp as he played it, in the title role of Krapp’s Last Tape, the year of Samuel Beckett’s 100th birth year celebration at the Mercury Theater’s “Buckets of Beckett”. I mentioned that once to John and he smiled, relieved I didn’t fawn over him because of Frasier. But neither he nor I wished to continue the verbal exchange beyond bringing him his coffee and tiramisu.

Back to hospice: Another reason it’s a misunderstanding of who we are when we’re invited to come and involve ourselves in your lives, is that my and most other hospices operate using paid employees who have many layers of professional responsibility, foremost to ourselves and our own families, to remain functioning; or soon the wear of emotional stress will find us looking for some different line of employment.

Perhaps this might explain some of our emotionally distancing jargon heard around the office. Wendell Berry speaks of a “sort of middling language, imitated from the sciences, that cannot speak of heaven or earth, but only of concepts. This is a rhetoric of nowhere, which forbids a passionate interest in, let alone a love of anything in particular” (Life Is a Miracle, III, 4, “Reductionism”).

In hospice meetings we hear repeated phrases about the “chosen family unit”, “specific death grief checklists” and “larger ecosystems”, as if an overlay of social scientific lingo brings a higher degree of accuracy to our medical assessments. (Also, cf. the mechanical use of “Perfect”, replied by nurses in response to our succinct answers, mini rewards that feel vaguely patronizing; and the emptied-of-empathy “Absolutely” that start their replies, as if forever holding in mind the need for customer’s satisfaction.) Can you really think that someone who talks about “chosen family units” and “loved ones” — other than the late Frank Zappa naming his daughter “Moon Unit”, or my sarcastic friend who refers to his wife as “the spousal unit” — really embody a family connection with you? Even while we’re “reviewing the components of informed decisions”, informed consents, risk assessments, or “implementing interventions continuously throughout the grief process”, and remind ourselves that “the grief assessment Starts at Admission”?

Just saying these words out loud, I feel like brushing my teeth!

We’re habituated to and mindlessly repeat once-fashionable office terms that recklessly fill out the verbiage of office management (i.e., business) everywhere, to soften the profit nature realities of competitive business: “Reach Out” for phone/email, and “Share” stands in for the various ways we just say something. In hospice, consider the degrees of separation from reality when we talk about “grief counseling Journeys” to soften the realities of anguish, death, and loss. We’re enjoined to “Create a safe space” for emotional release, to “manage their expectations” and “meet the families where they are” or even “carry the burden of their pain”.

So much for “work-life balance” (which is itself a telling phrase).

In the end, interchangeability of particular unique persons within local places surrounded by your own communities, with a history — culture, language, memory, skills — can never be accurately or compassionately guided by the mere abstractions of diagnosis and expected outcomes.

It’s no wonder that our CNAs rate the highest in follow-up satisfaction surveys. They have the least overlay of miseducated Professionalism, which today is so thoroughly mixed up with a business commercialism that it only reasons in terms of units of production — that is, in abstractions. CNAs never see their patients as abstractions; they see better the whole person and interact using honest speech with every person.

Let me now say a good word for the real needs and purposes — even permit me to say the word “utility” — when family attach themselves to the kind and physically very real representatives of their nursing memories. In other words, why some people would call me Family. Why after two weeks will a dying wife’s husband say he loves me?

We are there at one of their most significant moments, remain calm and don’t look away, giving the husbands and daughters courage. We say a lot of things or by being quiet help quite a bit, and now their Papa or Diane or that rat bastard uncle is stone dead and gone. With time comes calm, but just as every person who dies has a name and leaves unique memories among those left behind, so are the searing memories of the fatal weeks or hours peopled with heroes and villains.

I wish all of us were changed by more experiences before the end of things or thought with better discrimination about those experiences we had. But so often we don’t. We pass through life as in a dream; the few times we are shocked, such as during deaths, in our haste we grasp for a mythological company to order to sort our confusions. We need stories to talk about what happened.

Of course, religions promote this kind of thinking. And I say nothing against being with other believers who share the common languages — on the contrary, I promote all seeking. Where Meaning is found, it leads to better understanding of ourselves. To understand ourselves is to know how to relate with sensitivity to someone else.

And where we find long-time intimacy — with others who know us through and through — there we find community. “I got you” says our friend. And we believe her.

I got your back, says the combat buddy. After the war when the killing intimacy ends, the soldier returns home to think about living matters — biology or selling things or family.

When I think, “Who are in my community, and how do they belong there?” I no longer seek those among my employment, schools, organization memberships, even intensely intimate therapeutic associations. All those groups involved specific needs, that once are satisfied or resolved, get terminated. You might say those social network connections died.

In these days of impersonal urban creep, with television, computers, and the ubiquitous smartphone in our hands, we seldom meet for coffee or see one another exposed and vulnerable, as real people, let alone unconditionally accept one another under stressful conditions. I understand when people meet me under just these conditions, that I am so unusual that the impulse to say “I love you” or call me Family is difficult to resist.

Well, I just want to say that I love you too and knowing you even for this short while leaves a deep trace in my heart.

Someone will call you in a couple days, holidays, and anniversaries.

I hope to see you again, sometime. Take good care.

Goodbye.