Nearing Life’s End
Love, respect, understanding — and planning — in the final days
On a glorious fall day in tree-lined Naperville, it’s the time of year when leaves of maples and oaks turn and burst into color, a harbinger of the bare trees of winter yet also of new life in the spring. Blocks past North Central College, where young students hurry to class and amble ever so slowly toward adulthood, jobs, families and full lives, sits sprawling Edward Hospital and, a silent neighbor, historic Naperville Cemetery, with its aged tombstones. At this moment, at the hospital, life hangs in the balance for a few patients. Often expectedly, but sometimes most unexpectedly and bitterly, the scale of life tips the wrong way.
Death never ceases.
It’s a grim subject, made grimmer when life ends terribly. Yet it does not have to end nearly as badly as it often does. With forethought, planning and a steady supply of human kindness and love, death can be gentle, both for the one dying and loved ones. West Suburban Living has pulled back the curtains on death and dying and talked to nurses, chaplains, counselors and people in grief to offer a seasoned perspective on the most universal experience. We don’t mean to be morbid. But to face death with peace and dignity requires confronting it beforehand to lessen its bitter sting.
Kathy Plakovic, a palliative care nurse at Edward Hospital in Naperville, has seen a broad range of emotions and experiences in her many years of caring for seriously ill patients. As a loved one -— tethered to tubes and wires -— lies in a hospital bed, often after a lengthy series of healthcare crises and medical procedures, -emotions can run raw.
“I’ve had to referee — step in between loved ones ready to hit each other,” says Plakovic. Recently, after she gently told a daughter that her mother was dying, the daughter took a long, hard look at her and asserted, “I don’t believe you.”
We tiptoe around death, and when it nears, we still insist on averting our eyes. “We live in a death-denying culture,” Plakovic says.
Television medical dramas do not do us any favors. On TV, death is like an irksome fly you can swat away. On TV, 75 percent of CPRs save the patient, according to Plakovic. In real life, the save rate is a paltry three percent.
Palliative care handles serious illnesses. Some patients recover. Some never leave the hospital. Time and time again, with patients at risk of dying, patients and families are not clear on their long-term recovery. Or lack thereof. “The patient expects the doctor to bring it up. The doctor expects the patient to talk about it. There is never a discussion,” says Plakovic.
Plakovic and others at Edward do have that discussion. “Patients always ask me how much time they have left. I never say this many days or weeks or months. I say ‘weeks’ or ‘months,’” she explains. “I have an idea based on patients in the past.”
So some patients die sooner than they expected, before they can patch up relationships, arrange financial affairs or take a final trip to a beloved place. “People have regrets. They have unfinished business,” says Plakovic. “It’s a terrible situation.”
Modern medicine leaves families in a quandary. Their loved one often can be kept alive. But to what purpose? Federal law requires hospitals to inform admitted patients about advanced healthcare directives. Unfortunately, the process often ends there. The spirit of the law — to get patients to make their wishes known — is typically not heeded.
Even families that plan in advance often regretfully discover their planning was woefully inadequate. A husband will have completed a healthcare power of attorney. He designated his wife. But, surprise, “They’ve never talked it over,” says Plakovic. So the wife does not know what measures doctors should take as his condition worsens.
Plakovic’s daughter, not her husband, has her power of attorney. Her husband is “too emotionally invested” to discontinue medical intervention. “She knows my end-of-life wishes. It’s dinner table conversation in my household. I know her wishes,” she says.
“Families have to have the conversation. It’s not morbid. Talk about it when the family is together. What do you want done if you are in intensive care?” says Plakovic.
Death can be impossibly bitter. “You see a lot of emotional distress. They’re not ready to die. They want to see someone one more time. Their daughter is getting married,” says Plakovic. “It’s hard to predict beforehand how someone will handle it. Someone with a longtime, chronic illness who understands their health is failing tends to do better. They’re more ready. The hardest is younger people. They’re not ready to go.”
Death for residents in affluent areas such as Naperville can be surprisingly wrenching. After a long life of economic security and excellent healthcare, elderly couples often find themselves alone. Their children, taking good jobs, have moved far away. Now an 89-year-old woman, frail herself, looks after her ailing 87-year-old husband. Hospice care amounts to a few hours a week. “The physical needs (of a sick spouse) are tremendous. You’re on your own 23 hours a day,” says Plakovic.
A death that is gentle, both for patients and their families, requires communication beforehand, intelligent planning and an abundance of love, forgiveness and forbearance on both sides of the bed.
“The patient’s symptoms have to be well-controlled,” says Plakovic. “The patient and family need emotional and spiritual support. And the family needs the resources to take care of their loved one.”
Oddly and ironically, death can be a brand-new — very short, of course —chapter in life. Plakovic watched as a mother and son grappled with his fatal illness, brought on by AIDS. The religious mother was estranged from her son. But she put aside her judgment in his final days. Her son loved music, and she hired a therapy musician, who played Amazing Grace. “As she sang the last line, he took his final breath,” says Plakovic, fighting back tears in recounting the scene.
The Rev. Karen Swiderski has counseled hundreds of patients and their families in her 25 years as a hospital chaplain. So in September when she hurried to Wisconsin to be with her very ill 94-year-old father-in-law, she knew exactly what to say. Right? Actually, she knew exactly how to listen and how to respond to his needs. There are no magic words at the bedside of a terminal patient. But there is magic in understanding that patients need to lead the way.
“It’s not knowing what to say. It’s knowing to give him space. What does he want to talk about? You need to empower him, to let him decide on what he needs,” says Swiderski, the manager of spiritual care services at Edward and Linden Oaks Hospitals. “He needs to go at his own pace. You need to walk with him on his journey. You need to be fully present. It’s not doing things for people; it’s being with people.”
Formerly a Lutheran, Swiderski is an ordained minister for the American Baptists USA. Her father-in-law is a devout Catholic. “His faith is very important to him. “He’s ready to go,” she says. “It’s very ‘holy’ ground that we touch when we walk with someone facing the end of life.”
People near death may want to talk about their faith. Or, “they may want to talk about sports. Or cookies,” says Swiderski. She’s known her father-in-law for 52 years, since she was a 9-year-old in Logan Square. “He’s a World War II vet. He likes to talk about defending his country,” she says.
Respecting the dignity of the person is paramount throughout the dying process, says Swiderski. “It’s very important to always ask for permission. You may want to help them. Ask them, ‘Can I move your arm?’ Don’t assume you can do something. They may be physically uncomfortable, but they still may not be comfortable with you touching them.
“People who are sick feel they have lost control. They’ve lost control of making decisions. They’ve lost control of their body,” explains Swiderski. “Don’t presume to know what they are feeling.”
One family’s exceptional handling of a parent’s illness and death still stands out in Swiderski’s memory. The nine children “were so good to one another. They were the nicest family I ever met.” But it was what their mom did before she died that enabled them to deal with her death so magnificently. For each of them, she had left a letter to be opened in her later years. They opened the letters as she lay in intensive care. In the letters she told them she never wanted to be a burden for them as her health declined. “That provided such relief. All the tension went away,” says Swiderski.
Rarely will it occur that a loved one leaves behind such a specific missive, so Swiderski stresses the absolute need to talk about end-of-life issues with loved ones to know want they want in case they become incapacitated. That was borne out in her own life.
“My father believed he would never die. He never wanted to talk about it,” she says. Then came the phone call in January 2000. Her father, who was living in Arizona, had an aneurysm. He never regained consciousness. Her mom was a wreck. For 14 days, he lay on life support. She and her mom drove 60 miles to see him over and over and often returned suddenly when his condition seemed to change. Swiderski finally had to decide to end the life support.
“People joke about it. Put me in an envelope. Put me in a boat. But you need to tell your loved ones what your wishes are,” says Swiderski.
Her mom, who had dementia, died in August 2016. She was in hospice, which was a godsend.
“They knew what to do, what to say, where to begin. They let her keep her dignity. They kept her comfortable. They cared for her compassionately, and they cared for me, too,” says Swiderski.
Joy Lucinda, a counselor in Lisle, also is an advocate of hospice. “People wait too long to go to hospice,” she has observed. Here’s the deal with illness and grief -— those trying stages of life exacerbate long-standing personal tensions. If life were a Hallmark movie, families would set aside differences when mom or dad falls gravely ill. But often tensions mount. “The dynamics of siblings and parents don’t change because someone is dying. The level of function or dysfunction doesn’t change. Anger and irritation rise to the surface,” she says.
Families need a neutral party such as a neighbor or friend to serve as a buffer between them. Hospice, which can be at home, in a hospital or at a hospice center, also serves as a pressure-release valve. “It’s a neutral space where families can figure things out,” she says.
Lucinda also has advice for our encounters with the grieving. We bump into those in mourning at the grocery store or at school. It’s awkward, and most of us botch the brief social exchange. “The two biggest mistakes: ‘Let me know if there is something I can do for you,’ and ‘How are you doing?’” They don’t want to talk about the heavy stuff. They might not be doing so great. And asking them what they can do is putting the pressure on them.
“It’s much better to be more specific. If you’re a neighbor, you can ask, ‘Can I cook a meal for you?’ If you leave it open-ended, you’re increasing their stress level.”
Kathy Clarke of La Grange was with her dad that night in May at RML Hospital in Hinsdale. It had been a long five months since her father, John “Dan” McGrath, had a stroke. There had been an emergency surgery, conversations with doctors who doubted his survival, months in the hospital, minor improvements in health followed by serious setbacks and heartfelt family meetings. The uncertainty surrounding her father was difficult. “The hardest part was that we didn’t know what to do. We weren’t sure what it would take to keep him alive,” she says.
Clarke is one of six children of Peggy and Dan McGrath. He had been a football star at Leo and then in the Big Ten at Indiana. Peggy was a cheerleader, his high school sweetheart. Clarke’s father loved watching the Bears and Cubs, regaling the family with his stories and -— perhaps surprisingly for a big, tough football guy — seeing theatre shows with his wife.
Clarke was no stranger to death in the family. When she was 14, her 16-year-old brother died in an accident. She discovered something about herself then. “I never realized how important my faith was to me, how much strength it gave me,” says Clarke, the mother of four sons.
This year Clarke traveled to New York to see her mother-in-law one last time. She died in March surrounded by almost her entire family. “It was just the most spiritual passing,” says Clarke. “We were praying. She looked up, smiled and passed.”
Before that night in May, Peggy and her children had a meeting. They realized that her husband and their father was dying. They decided on hospice for him. “Everybody’s advice is look to hospice sooner. What that means is wanting to accept that the person will not survive and to make them as comfortable as possible,” says Clarke.
Her father loved to jitterbug and loved singers like Streisand, Sinatra and Nat King Cole. So on that May night, Clarke played their songs on her iPhone and held her father’s hand, as if to dance. She then noticed something when she stretched his arms, as she did routinely. “It was very heavy, stiff,” she says. “I knew he would pass that night.”
He died a few hours after she left. “The doctors — they’re in the business. They know that all this is something families need to process. He’ll live as long as the family needs to come to terms with it,” Clarke says. “That’s pretty much what happened.”Edit Module