1. Ufema, Joy RN, MS

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A death isn't business as usual

Last week, a coworker whose dad recently died returned to work after a 3-week absence. I asked how she was doing, expecting the usual"I'm okay; thanks for asking."Instead, she started shaking and crying and poured her heart out to me. Caught off guard, I mumbled something and gave her a hug. What did I do wrong?-R.M., CALIF.


Your only error was expecting "the usual." We're such complex creatures that I doubt anything surrounding death can ever be categorized as usual. But don't be too hard on yourself. Your question reflected your genuine concern. Of course you had no idea that she'd cry, but that was a natural response for her at that time. Even though she'd been off work for more than the "usual" 3 days, her wound's still fresh. Three weeks-or 3 months-is just too soon to be "okay."


Your hug was the perfect thing to do. Other coworkers, afraid to say the wrong thing and upset her, probably chose not to ask how she was doing. I'd say, in the midst of her tears, she was grateful that you cared enough to ask.

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Different kinds of healing

My patient, a devout Catholic, is considering a risky radical abdominal surgery that can't cure her condition but may extend her life for a year. She says she's okay with either outcome, living longer or dying in the OR. I believe she's sincere, even though her daughter feels she's being talked into the procedure by the surgeon. Now the daughter's asked me to tell her mother how horrible the surgery is and that most patients suffer greatly.


I'm sympathetic to her concerns because I've cared for several patients who underwent this surgery and none of them fully recovered. But it's not my place to explain the risks and benefits of surgery to the patient or to intrude on her relationship with her physician. How should I handle this?-S.N., WIS.


Is the daughter aware that in her mother's mind, she's making a win-win choice?


This doesn't sound like a patient who's being coerced into doing something she doesn't want to do. Ironically, if she were to choose no intervention and died soon, the daughter could do a complete turnaround and worry that her mom gave up without pursuing all options.


This happened to a colleague's father who was critically ill when offered surgery. He, too, had tremendous faith. He chose to have surgery and simply placed the outcome in God's hands. Postoperatively he had numerous complications. After a short struggle, he died with grace, peace, and dignity. But during that failed attempt at recovery, his wife was distraught and couldn't accept what he'd accepted. In his spirit, he was healed.


Explain to the daughter that you can't discuss the odds for recovery because every patient is different. Instead, encourage her to talk with her mother in depth about her beliefs and goals. Offer to sit in on the conversation if they wish. Let the daughter hear her own mother discuss her position as a patient with a serious illness. Then support them both, regardless of the outcome.



Making decisions under pressure

As a thanatologist, have you ever influenced a patient's decision about end-of-life directives?-B.E., MASS.


Perhaps the following anecdote will answer your question.


I heard a code announcement and quickly ran to room 448. Staff from numerous disciplines rushed to Mr. Hampton's bedside as the intensivist, Dr. Peters, quietly issued orders.


Standing a few yards down the hall was a woman dressed in a blue pantsuit, her hands covering her mouth as if to stifle a scream. I went to her and asked if she'd been visiting the patient. She said yes; he was her husband.


"He's had ALS (amyotrophic lateral sclerosis) for 10 years," she said. "Just now he told me he couldn't breathe, so I called for help."


"Excuse me a moment. I'll go check on him for you," I said.


When I returned to the room, Mr. Hampton was receiving bi-level positive airway pressure (BiPap). His eyes were wide open, frightened. Dr. Peters was asking him if he wanted intubation or to be kept comfortable with morphine.


"Get[horizontal ellipsis]my[horizontal ellipsis]wife," he gasped through the pressured air.


Standing by her husband's bed, Mrs. Hampton listened intently as the intensivist quickly explained the two options available in this crisis. Between labored breaths, Mr. Hampton asked his wife, "What should I do?"


Stunned, she was speechless. Then she stammered, "I, ah, it's up to[horizontal ellipsis].I, ah, don't know." She began to cry.


It seemed unfair to ask her to make a momentous decision in the midst of this crisis. Meanwhile, the patient's clinical status was rapidly deteriorating. The indecision was causing immeasurable suffering for them both.


As Dr. Peters prepared to intubate Mr. Hampton, I put my arm around Mrs. Hampton and told her we'd help her and her husband sort this out in a day or two. She smiled weakly.


Five days later, Mr. Hampton chose tracheotomy. He remained in the hospital for 2 weeks while his wife learned to manage the ventilator. He was discharged home.



What's left is what's real

Before being admitted to the ICU, my terminally ill patient had been undergoing chemotherapy and radiation treatment for advanced breast cancer. But now she's simply exhausted and sick-more from the treatments than the cancer. She's lost her hair and eyebrows, her skin's bruised, and both her breasts have been removed. Last evening she told me she isn't "her" anymore. Her family and friends seem devoted to her, so I told her that they loved thereal her, her spirit and personality. What more can I do to comfort her?-A.R., LA.


You did fine. You helped her see that she's still a woman who's beautiful enough on the inside for all to love and want to be in her presence. Seeing our patients like this is difficult because they're usually such troopers. But then when they lose the hard-fought battle, they ask, "Was it all worth it?"


Following a physician referral, I stopped in to see a patient with end-stage chronic obstructive pulmonary disease. I asked, "Are you Mr. Roker?"


He replied, "What's left of him."


I introduced myself and asked if he felt like talking about his illness and plans for home hospice.


"Well, nurse, I've had stuff happen to me that only women get. About a year ago I got prostate cancer and they did that seed implant thing, but now I have to wear a pad because I leak my urine. Then I took hormones for the prostate, but the next thing you know I've got something I didn't think men could ever get: breast cancer. Two tumors, so they cut them out. Now there's not much left of me."


"That's a nasty side effect to treatment that's supposed to cure the original problem," I said, touching his arm.


"Yeah, and now I'm weak as a kitten-can't pick up my great-granddaughter. Do you believe it? Here I am, surviving World War II without a scratch, and now everything's falling apart."


He was breathing heavily, so I adjusted his nasal cannula and asked if we should take a break. He shook his head no. I spoke about the many cards and flowers in his room, noting the child's drawings taped on the bathroom door.


"Those are from my little angel. She crawls all over me and snuggles like a little bunny."


"You know, Mr. Roker, I think what's left of you is still valuable. Thank you for going to war so I can be free. Your wife probably thanks you for these many years of marriage-"


"Fifty-seven," he interjected.


"And you've obviously been a great dad and grandpa to your kids and their kids. I think what's left of you is the part that's the most important. Do you think it matters to those folks that you've had cancer? They're just happy they still have you."


I remained silent while he pondered this. After several minutes he took my hand, held it tightly, and said, "Joy is the right name for you because that's what you give to people." Then he laid back and closed his eyes for a well-earned rest.



Meeting simple needs

As a new RN, I don't have much experience with death and dying. What do you think a terminally ill patient needs most? -H.M., N.Y.


A dying patient needs three things:


l. relief from distressing symptoms, such as pain and the fear of pain


2. a caring environment where his needs can be met without the fear of being a burden and where his individuality and integrity as a person can be maintained


3. time and opportunity to voice his fears, to come to terms with his life and his illness, and to draw closer to his family.


If you keep these three basic needs in mind, you'll find ways to provide meaningful end-of-life comfort and care as you work with dying patients throughout your career.