What Hospice Means To Patients, Families


 
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SAN FRANCISCO (ASRN.ORG) - For Capital Hospice patients like Gloria Huet, the Adler Center offers a glimpse of what could be a fitting final home, where they could die in comfort and dignity, surrounded to the end by their families.

Gloria has breast cancer and most likely has only a few months left to live. She had breast cancer before. "We thought we'd beaten it," her son Charles said. But the cancer returned two years ago, and Gloria was receiving Hospice care at her home in Leesburg as well as help from her son and daughter-in-law.

Gloria received Hospice care, primarily from her case manager, RN Gwen Davis, and nursing aide Jane Crook.

Gloria's condition is declining. The cancer has spread to her lungs and bones, she has difficulty breathing, diabetes, arthritis and suffers from fibromyalgia. "She's got a lot on her plate," Davis said. She is in her 70s and is on oxygen full time.

Gwen's job is to assess Gloria's symptoms and needs, as well as to help the family learn how to care for her at home. "She counts on me to be honest with her and assess her needs; she trusts me to fill her medicine box every week, to check her vitals, etc."

Part of the assessment is determining what durable medical equipment may be necessary, what medications Gloria needs, and working with the attending physician as well as making sure Gloria takes her meds at the right time and safely. She sees Gloria increasingly often now, and helps her family learn how to manage changing conditions.

Crook has been involved with Hospice for 13 years and comes three days a week.

"I'm crazy about her," Gloria said. The county also provided help through its Home Health services-someone comes to clean and meals are brought by volunteers, from Meals on Wheels and Loudoun Interfaith Relief. A social worker, chaplain and bereavement counselor rounded out the team and resources available to Gloria.

Gloria has limited resources, but Medicare and Hospice cover her care. "Everything's covered the same, with or without money," Gwen said, adding "what the patient needs drives the care."

In some cases where patients are approaching the end, Gwen said "many families are in denial it's happening. We support them through the journey and show them how to help [the patient.]"

Gloria, however, is very matter-of-fact about her situation, although she confessed to having been "very angry and hurt" when the cancer returned. "Why me," she said, recalling, "I cried a lot, really cried, every time I talked to someone. It was the very worst thing, and it was here and in my face."

Despite that, she showed a cheerful spirit and a straightforward realism about her condition. "It's a dirty deal, and very unfair. I have to work on everything, but I have great support."

The support of the Hospice team has helped get her through her anger and despair to a place of calm and resolution. "Capital Hospice is a very wonderful organization," Gloria said. "Without them I'd give up."

The trust between Gloria and the two Hospice professionals is evident. "It would be excruciatingly difficult without Gwen. I trust her, she knows what I need and does it all for free. Jane is very kind. I have a wide variety of support, the doctor, chaplain, and without Medicare I couldn't afford these services," she said.

Knowing the end is coming is comforting in a way. "You can relax, you don't feel so floating around in space," she said. "You have to face it, I thought I'd better start by telling my children and arranging what to do with, say, a favorite necklace, and looking at what death means."

Am I afraid? Yes, probably of the unknown. I believe in God, so I think I'm going to be ok. I read the Bible, I sit down and pray and get a grip and think about what I can do with the time I have left to me, I pray for others," Gloria said.

She also watches television, often at night and early morning when she can't sleep. Gwen's professionalism and calm is a big help, she said. "Sometimes I think I might be packing it in this day," and asks Gwen, "is this the big one, the big day?" She is reassured by Gwen's response. "I don't think it's going to kill you today," she says after an examination.

She said Gwen also gives her good advice about her situation, based on her experience with others who've made that same journey.

"Nobody talks about death. It's a comfort to be able to talk about it with Jane and Gwen openly, also with Julie Mitchell, the social worker."

Her day is ordered. Daughter-in-law Carol Huet comes and makes her breakfast-blueberries, Rice Krispies and coffee-and gets her to take her pills. Jane gets Gloria her clothes, helps her shower, makes the bed and changes the sheets. Then Gloria may watch Channel 4 for news and weather, read a while-she loves romance novels, especially anything to do with historical fiction. She also gets movies from Netflix. Jane helps with lunch, home delivered meals, checks her oxygen and changes the filter. She also massages Gloria's feet. "She's my Girl Friday," Gloria said affectionately.

The support of her family also is important to Gloria. A widow, she has two sons, David, who lives in Richmond, but comes home at weekends, and Charles, who works in Washington, DC, but sees her at night or weekends. He also fixes small repair jobs for her, and her grandchildren visit regularly. Every Sunday, they have dinner with Gloria at her home. Carol runs errands for Gloria, does her laundry, sometimes watches movies with her and one of her friends keeps her supplied with novels.

Spending a good deal of her time with Gloria, Carol said, has made it easier for her to adjust to Gloria's diminishing capacities and ability to function at home. Her more active role in Gloria's life "has made us come closer," she said.

"Two years ago, they gave her six months. She fooled us all, lived much longer and we're glad about that," Carol said. At the beginning of the year, doctors gave Gloria another six months, and now until the fall. "She has an amazing spirit," Carol said.

It's not easy being a caregiver, a job Gwen calls "very difficult." But Charles and Carol have nothing but praise for the Hospice team, noting their ready help, and the relationship that they, too, have formed with the Hospice team.

As Gloria declines, the Hospice team has stepped up the assistance. "There's always someone we can call in an emergency," Carol said. And the social worker has been of particular help. "She had me write things down that would be helpful for me when the final time comes. She helped me, and Gloria too, because Gloria wasn't sure that I loved her. We said certain things and I started to cry. It was a hard time, but she became aware that we did love her-and it mattered to her and to us."

"It gives me peace of mind knowing that if I can't make it, someone will. Most important, they take care of her health and give her the ability to live independently. For us as a family, we have peace of mind that she's well taken care of and, even in the final days, she'll still be kept comfortable and looked after," Charles said.

Gwen is very clear about her role and about what she has to do to be able to be calm and able to give the professional advice and assistance her patients rely on.

"I take care of myself. I spend quiet time, I exercise, I eat well, take breaks, visit with co-workers as much as I can, especially if it's an emotionally demanding family. I have to be really clear to the family what I'm supposed to be there for."

"For me, death isn't the end. It helps me to know they're not in pain and their spirit is free."

Gloria wants to die at home, if possible. "I don't want to go to a nursing home. I'm large," she said matter of factly. "I need space and I like privacy. It's very important for me to stay at home." But she knows that may not be possible. "If she [Gwen] thinks I should go, I will. But, I'd rather die here in my house."

"What you want and what you get are sometimes different. It's a test of the individual's courage and strength. I think Hospice is a wonderful organization. They do so many things to help a person in their last years or days of their life and to stay in their own home with their own people," Gloria said.

"[Hospice care] helps you with your mind. If you give Hospice a try, you'd be surprised by all the effort, the kindness people give, and the way they don't invade your privacy. They don't treat you like a baby. It's a wonderful place to tap into."

When signs indicate the end is near, patients need their friends as family members are not always available, Gwen said. "If the decline is acute, the patient needs an inpatient unit."

And that's the need the Adler Center is designed to meet.


Copyright 2010- American Society of Registered Nurses (ASRN.ORG)-All Rights Reserved 



 
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Articles in this issue:

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    Editor-in Chief:
    Kirsten Nicole

    Editorial Staff:
    Kirsten Nicole
    Stan Kenyon
    Robyn Bowman
    Kimberly McNabb
    Lisa Gordon
    Stephanie Robinson

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    Kirsten Nicole
    Stan Kenyon
    Liz Di Bernardo
    Cris Lobato
    Elisa Howard
    Susan Cramer

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