Caring for the dying Life on a hospice ward
Freeman, Mary Lee
CARING FOR THE DYING My patients, my work, my faith Mary Lee Freeman F riday afternoon at the hospice center. I punch in and eye the "white board," looking for empty white strips and...
...Haddock went on to conflate dignity with self-esteem, and to suggest that "to ascertain if one possessed dignity, self-esteem could be measured using a scale...
...Yet the definitions of dignity are all over the map...
...Steve Wilkins's family is restless...
...These three needs are huge and often unmet in a culture that can barely make sense of any of them and supports precisely none of them...
...The profile included the attributes of "self-control, control of environment, autonomy, and independence"—all of which the dying person is hard-pressed to hold on to...
...We know Kapp has a point, one we hope we each learned long ago...
...Certainly, physical pain ought to be aggressively treated—and only recently have we recognized how often that task is not per-formed nearly as well as it could be...
...Yet just as certainly we must resist the temptation to try to stamp out the suffering that comes with our connectedness to each other...
...She asks everyone—aides, nurses, physicians, volunteers— Commonweal 14 January 30, 2004 the same question, night after night, and ponders the vagueness and inconsistency of our answers...
...How will the world remember me...
...I am not the one with the chronic disease, dealing with the ravages of it on my body and grieving the impending loss of my life and all that is dear to me...
...It is both relentlessly sad and unfailingly hopeful, peppered with facts about vital signs taken, symptom-control efforts made, new physician orders received...
...They don't do us much good in the hospice facility...
...In the fall of 2000, Bill and Judith Moyers presented a four-part PBS television series on death and dying...
...If our definition of dignity in the dying process is built only on happy accidents like continence, or strength, or the ability to utter profundities until our last breath, or independence—and if we are committed to people having "death with dignity"—then we will panic as strength wanes, Foley catheters need placing, interaction gives way to sleep, and independence mutates into dependence and helplessness...
...And what about that tenacious notion that we are creatures made in the image of God...
...Marshall Kapp, "The Right to Die Mad" J read these words to my colleagues, assembled for our weekly "interdisciplinary" team meeting...
...Should I just say, I pray...
...His two older sisters will be coming "home" from grade school soon, and his younger sister, Lily, is being her cute, showboat self, hanging out once again at the nurses' station while mom naps on the extra bed in Miguelito's room...
...All the parties involved come to understand that, yes, this particular per-son's days are numbered, that there will be a death here, and that we will do all we can to accompany this person along the road that leads to death...
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...It is with the visitors from hospice that the dying person has a last chance to be better than he re-ally was...
...They were hanging out last night, and they'll be hanging out tonight and through the weekend, spirits never flagging, manners al-ways impeccable, their love for their husband and father and brother deep and wide and joyful...
...Caring asks doing...better immersion than to live untouched....Yet how will you sustain...
...This seventeen-year-old will cause me to think back, over six years of work on two coasts and in three cities, to the last time I witnessed wailing at a deathbed...
...What happens while they're here cannot but prompt reflection...
...It is possible to have whole conversations about these topics without speaking a word...
...Each time there's a "patio death" I think of Saint Francis, hoisted outdoors in his last hour by his own request, that he might die lying upon the cool brown earth...
...It will unnerve everyone, because we're not used to screamers...
...DAYTON FOR FURTHER INFORMATION AND APPLICATIONS: RELIGIOUS STUDIES DEPT...
...Once home I met her—a wonderful woman—and later, sitting vigil, winced a bit as I imagined her at weekly staff meetings, giving her patient summaries just as I give mine, summing up whole worlds in a few sentences while around the table heads nod knowingly...
...As a nursing student I read an article by a nurse researcher, Jane Had-dock, whose work had led her to posit a summary profile of the "dignified self...
...If we consider ourselves masters, rather than stewards, of our lives, then dying and death are the ultimate indignity, and the rooms and hallways where I work are filled with indignities piled upon indignities, clear up to the rafters...
...Do you think the food was in there long enough for my body to make use of it...
...Everyone, from prolife vitalists to Hem-lock Society cheerleaders, speaks in terms of "dignity...
...He smiles broadly...
...For the rest of the meeting, we keep interrupting the social workers' reports: "But did you tell him to have a nice death...
...Judith, his wife, wanted On Our Own Terms: Dying in America...
...Should I just say it...
...Although that is not always true, it usually is...
...Allowing and helping a patient to remain true to individual character and personality to the very end even if that entails bitterness and anger is preferable to the uninvited interdisciplinary team of health-care professionals energetically hectoring the dying patient to change personalities at that late date and making the patient feel additional guilt and shame for resisting the thanatologically sensitive experts' injunctions to "have a nice death...
...All the names of patients in this essay are pseudonyms...
...Some day," I say...
...Thank you...
...I wonder if, after all, tonight is his night, but after a long apneic spell, his diaphragm rises up, then gently falls...
...In Room 15 is Franklin Schuebel, ninety-five years old...
...It is a strange thing to walk the hospice hallways, amidst such suffering, and to have a question posed about my sustenance...
...Those doors to his patio—a bed can fit through them...
...Faye Niesen is asleep, mouth open in a smile, lit by the blue light from the television, her constant companion and security blanket...
...Acceptance of the human condition—not horror at its indignities—is the best way of combating the influence of those who feel compelled in their own well-meaning way to has-ten death's arrival...
...There isn't much of that...
...We don't take the wingnuts lightly, because memories are still fresh of one of our favorite patient's sons being caught in a supervisor's office trying to heist a laptop...
...I punch in and eye the "white board," looking for empty white strips and unfamiliar names, quickly piecing together who has died, who is still living in this eighteen-bed facility...
...Develop a program tailored to your interests and needs...
...Hospices do not place "Help Wanted" ads touting "Guilt...
...Bob Dylan, "Forever Young" There are a few things one learns, playing a bit role in the lives of the dying and their families...
...GETTY IMAGES Commonweal I I January 30, 2004 mission...
...There is an understandable desire for a neat and ordered segue from life to death...
...I need to know I wasn't a terrible parent...
...IN PASTORAL MINISTRY PH.D...
...Still, these mysteries—whether spoken about or not, whether explicitly engaged or not—are omnipresent in my work...
...When my own father was dying at home, I spoke with his hospice nurse by phone from afar and listened to her assessment of my dad's situation...
...A daughter follows me out into the hallway...
...The theologian Karl Rahner noted, "We do not always dwell at the core of our incomprehensible being, we stay on the surface, we are exiled to humdrum, bustling everyday life...
...Physician Ira Byock talks about the "Five Things" that must be said if there is to be closure in a significant relationship: "Forgive me...
...for the relentlessly cheerful patient with ALS who smiles even as she cries about no longer being able to walk in the woods and weed her garden...
...I move on...
...My Lord and Savior, I just cannot handle one more...
...I have assumed various roles and performed various duties over the years, spending time as a "field nurse" visiting hospice patients and families in their homes, as a hospital-based palliative-care consultant tending to terminally ill patients in the hospital or being discharged, and as a nurse in a free-standing hospice facility...
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...After the chuck-ling dies down, we listen closely to what Mary has to say...
...He pats my hand...
...How do they sound...
...As soon as I remove the stethoscope earpieces from my ears, he pops the same disconcertingly hopeful questions about being reunited with his wife...
...Another is that suffering is part of the human condition, and trying to stamp it out or ignore it or gloss over it is a dangerous illusion...
...As a result, a Post-It note went on the receptionist's computer identifying an-other family member not permitted entry to the ward...
...Can we really get out the Likert attitude scales and plot whether someone possesses dignity or not...
...I wish Steve were not dying...
...That list is always present—sometimes short, sometimes impressively, depressingly long...
...For the Dorian Gray families, ugly from decades of sin and dysfunction...
...we all have a right to die with dignity," " goes the mantra...
...Part 2, in our February 13 issue, will feature essays by pathologist F. Gonzalez-Crussi, theologian Michael Baxter, and Commonweal movie critic Richard Alleva...
...on the unit...
...CARING FOR THE DYING My patients, my work, my faith Mary Lee Freeman F riday afternoon at the hospice center...
...The Delgados have become so many lumps under blankets on the beds, the couch, the floor...
...The emotion most prevalent here when death comes, as it does almost daily, is relief...
...He sighs a resigned, tired sigh...
...The evening nurses and aides go to listen to the taped re-port left by the day shift...
...All loaded words...
...and third, a willingness on the part of the dying to allow themselves to be cared for...
...One can do a fair bit of damage energetically hectoring someone to speak them, but perhaps just as much damage by pretending they don't exist...
...Suffering...
...Frank Morgan's Mood Indigo has replaced Miles Davis on the CD player...
...Grable's room, one daughter remains...
...Bill wanted to call it, Living with Dying...
...Connect learning with leadership and service in mentored teaching and practicum experiences...
...In my experience, three things are needed at the end of life: first, a recognition that dignity is some-thing to be honored in people quite apart from their abiliCommonweal 13 January 30, 2004 ties and failings...
...I think...
...UNIVERSITY OF DAYTON 300 COLLEGE PARK DAYTON, OH 45469-1530 937-229-4321 E-MAIL: Relstudy@udayton.edu WEESITE: http://wwvv.udayton.edu/ -relstudy M.A...
...I learned that lesson the other night as I unsuspectingly stepped on tiny Lilly as I tiptoed into Miguelito's darkened room to administer, through the "central line" sutured into his chest, his final medications of the day...
...Death will come that afternoon, quietly, before his doting sisters return from school...
...Some patients and families are veritable black holes of need, with generations of sin and dysfunction that hardly lend themselves to easy understanding, let alone tidy solutions, happy deaths, and what the bereavement experts call "uncomplicated grief...
...I doubt it...
...J is 9:30 p.m...
...she asks me...
...255 (mcd@portsmouthabbey.org) or email Father Ambrose at fatherambrose@portsmouthabbey.org PORTSMOUTH...
...You would not last long working in a hospice if you went around energetically hectoring people to make their way through Ira Byock's list of the five things people need to say to reach closure...
...IN THEOLOGICAL STUDIES M.A...
...Benefit...
...Each night he waits patiently as I listen to his heart and lungs...
...It is a humbling and enlightening thing to be, essentially, a participant observer in thousands of final scenes...
...John Roth's family welcomes me in with smiles...
...I start at the bottom of the list, Room 19 (no Room 13 here—these folks have had their fair share of bad luck...
...Eleanor Kempe is awake, waiting for the miracle she knows will come...
...Sometimes I am rather absurdly but quite obviously looked to as the embodiment of "the world," as in, "What does the world think of me...
...for the family of a strong and vibrant col-league who just weeks before had been bathing patients but then occupied a room of her own among them, preceding into death many of those she had bathed...
...Sure," I say...
...Goodbye...
...Soon she will be sent home, and we will hear of her protracted decline but ultimately peaceful death from our field-nurse colleagues...
...I often find myself, when I am visiting patients in theirhomes, in the position of being the last new person to get to know them, of being the last nonfamily contact with the outside world...
...The articles in this issue by Mary Lee Freeman and John Garvey compose part I of a two-part series titled "Thinking about Death...
...Death, even less so...
...Stewart Alsop am a nurse practitioner by training, and the field of hospice and palliative care is my metier...
...Life cannot be grasped simply on our own terms...
...Wanting to dignify death, we soon will want to has-ten it...
...Cranky people die cranky...
...Do you think tonight might be the night...
...Quite honestly, I am some-times thankful for what I don't know about my patients' lives...
...Just ask the state "surveyors" who evaluate and accredit our facilities and who pore over our patients' charts, looking for evidence that we have, as they put it, "accomplished the goals of the care plan," and that patients have benefited from our ability to arrange for them freedom from suffering...
...What attracts others and me to this work, I think, is the privilege of dealing on a daily basis with life in the raw...
...Hyperalert, she watches me hook her gastric tube back up to suction, removing from her all that she has taken in for supper, all that would never get past her bowel obstruction and so is vacuumed out before it all comes back up on its own...
...No matter how many times I am asked that question,it still takes me by surprise...
...Abusive alcoholics die terrorizing their frightened spouses...
...Affixed to the wall above my desk is a scrap of paper with this reminder from H. L. Mencken: "For every human problem there is a solution that is simple, neat, and wrong...
...And yet, "On Our Own Terms" is the way the cultural discussion has taken shape, especially among graying Baby Boomers...
...Death...
...The whole family is wired...
...I forgive you...
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...Freedom...
...It is a quiet but lively place, this unit...
...I love you...
...Franklin Schuebel, sweet Franklin Schuebel, lies still, his face spotlit by a bit of light from under the bathroom door...
...Bill thought that Judith's title pandered to the worst impulses of Americans about the value of autonomy and self-sufficiency...
...That note is still there, sitting above the other Post-It listing all the relatives not allowed to receive information about one patient or another...
...Friends imagine that where I work there must be a constant drone of keening and sobbing...
...I am tongue-tied not only because the question seems directed to the wrong party, but because I struggle to put acceptable words to the images and feelings that crowd my mind...
...In Room 14 is Steve Wilkins, forty-eight years old, who will die tonight, and whose seventeen-year-old daughter will scream when he does...
...In prayer, as in life, the neat categories I have given above—patients, families, professionals—all meld one into the other...
...We all have a right to die on our own terms...
...In Room 12 is "Airman" Mike Grable, an African American and former professional wrestler, whose seven children will one day soon accompany his barrel-chested body down the long corridor, past the nurses' station, through the lobby, and out the front door, singing "Amazing Grace" as they go...
...She is wired...
...The teenage daughter glares at me...
...There is very little that is superficial about caring for the dying...
...Prepare for work in ministry and education...
...She will soon die, no longer expecting a miracle—not devastated and angry, as we had feared, but surprisingly serene...
...We only wish the surveyors who assess our performance would embrace it...
...Police were summoned, restraining orders rendered...
...A wise hospice physician from Scotland once adapted an old adage to remind his colleagues: "There are three things you need to practice good palliative care: a pair of ears to listen with, a butt to sit on, and a mouth to keep shut...
...A New York Times op-ed piece about the series revealed that the Moyers-es had disagreed about what it should be titled...
...In Mr...
...Probably not tonight...
...Are they bad...
...Opinions about the dying person are al-ready well established and seemingly unshakable among family members...
...second, an inclination and a commitment on the part of people—professionals and nonprofessionals alike—to step up and care for dying persons as their ability to care for themselves wanes...
...Eminently practical people die concerned about eminently practical things...
...Isn't it depressing...
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...If we imagine that there is a way to get through some semblance of that list and not suffer along the way, I think we are naive...
...That's fine with me...
...Eleanor asks me...
...That is something people need to hear, and participating in such care is not a bad way to use one's talents...
...we are all the dying, all of us sustained by grace and mercy and love...
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...And while many of these patients end up being discharged to their homes after short stays, a great many of them leave on the black stretchers maneuvered down the corridor by funeral-home attendants, the same small passel of family members bringing up the rear...
...I wish I knew them better...
...for a twenty-six-year-old patient's mother, stricken and wide-eyed, absolutely certain that her lapsed Lutheran son will be going to hell...
...Saying that I love this work prompts people to think I must be a saint (that would be a "no") or a scythe-carrying sicko (ditto, I hope...
...Her first words: "Can we just stop admitting the patients with wingnut families, just for a few days...
...In Room 16 is the John Roth family, with Miles Davis on the CD player and pale ale in the cooler...
...My work requires a daily recognition and acceptance of the human condition...
...Freedom...
...A day-shift staff nurse, Mary, the preacher's wife, comes in and interrupts our listening to announce a new adWhere is he going...
...Sadly, "concept analyses" like Haddock's, and the mindset they represent, are standard fare in the world of health care...
...She did—and didn't—have the family pegged...
...Mary Lee Freeman, a former Commonweal intern, is a nurse practitioner...
...Hospice workers know—but sometimes forget—that we are seeing just the tip of the iceberg of people's histories...
...Even more to the point, I am not a family member who has been shouldering the multiple burdens of care-giving, of medical bills, of contemplating life without my beloved...
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...As death nears, emotional needs often loom large, but are so seldom spoken...
...A dying man needs to die, as a sleepy man needs to sleep, and there conies a time when it is wrong, as well as useless, to resist...
...Yet once in a while, we too are thrown into the mystery of guilt, death, forgiveness, and unfathomable freedom that issues from God into the midst of our life...
...No, Mr...
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...For more information, call Dan McDonough at 401.683.2000 ext...
...One is that "death with dignity" is an ambiguous term...
...I need to know that the nurse and the aide and the doctor caring for me actually like me...
...Judith won, but Bill was right...
...How do you keep doing this work...
...Tillie Olson, "0 Yes...
...Second only to Mother Angelica in Eleanor's mind is the Food Network's Emeril, whose trademark exclamation "Barn...
...I need to be forgiven...
...Schuebel desperately misses his wife, who died last year...
...Sure," I say...
...May you always do for others and let others do for you...
...Hospice patients and their stories are a refreshing oasis from the world of artificial hype and imagined crises—not all crises outside a hospice are imagined, of course, but many are...
...Most of them, including his children, I have not met before...
...In Room 17 is petite Eleanor Kempe with the gimlet eyes and the protruding abdominal tumors that make this eightytwo-year-old look oddly pregnant as she sits and watches Mother Angelica on EWTN...
...We are all the living...
...It is against his grieving father's chest that Miguelito's sedated body will be pressed weeks later after a morning of fright and struggles for air...
...Spoken or not, acknowledged or not, the needs usually run something like this: I need everyone to know I didn't "give up" against the cancer...
...Eleanor keeps a pocketbook tucked just so at her left hip, under the sheets, and Kleenex tucked just so up the right sleeve of her thin bathrobe...
...Room 19 is the stomping ground of the Delgado family...
...In Room 18 is Faye Niesen, whose family complains about the Delgados, then feels badly about complaining, and then complains some more...
...Schuebel, everything sounds pretty good in there...
...Miguelito, five years old, with his bald pate and big eyes, is speeding up and down the hallways in a motorized Big Wheel...
...Hospice workers have an axiom, "People die the way they live...
...We could wheel him out there...
...pops out like bullets from at least five or six rooms on the unit, each night...
...How does one quantify the language about human dignity in the UN Charter...
...A few days later, the sun will be shining, the breeze blowing, and the omnipresent family scattered around the patio when John draws his last breath...
...Periodically, ambulance drivers come with their bright orange stretcher contraptions, bearing sedated patients whose pale faces look tiredly out over white sheets and blankets, a small passel of family members bringing up the rear...
...The north-wing patients are present and accounted for...
...Forgiveness...
Vol. 131 • January 2004 • No. 2
