Quantity Vs. Quality Of Life

"I saw what it was like to have a long life that was not a good life. I wanted to have as much quality of life as possible and didn't want to go to battle if there was no reason to go to battle."
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I am no stranger to the quantity-versus-quality of life debate. When my mother was diagnosed with Stage IV metastatic breast cancer, my family quickly learned to play the game of weighing options and picking treatments, according to a risk/benefit analysis. We always took into account whether a given treatment would improve my mother's comfort and enjoyment, sustain my mother's life as-is or compromise what time she had left. For the most part, we opted for palliative care treatments that maintained my mother's quality of life while potentially extending her time with us.

Amy Berman, senior program officer at the John A. Hartford Foundation, understands this choice very well. At 51, she too was diagnosed with stage IV metastatic breast cancer -- in her case, after finding a rough, red spot on her breast. As most women in her situation would do, Berman contacted her general practitioner and had a mammogram, leading to a biopsy, which in turn confirmed the diagnosis of inflammatory breast cancer.

Knowing that a stage IV diagnosis is a terminal one, Berman chose to find treatment options with the least amount of side effects and, therefore, negative impact on her life. Having watched her own grandmother suffer a long and debilitating battle with Alzheimer's, Berman was clear about her path forward: "I saw what it was like to have a long life that was not a good life," she recalls. "I wanted to have as much quality of life as possible and didn't want to go to battle if there was no reason to go to battle."

In both Berman's and my mother's cases, the specialists involved recommended very aggressive treatments, with no guarantee of improving or sustaining life. "Healthcare will automatically be aggressive," says Berman, "unless you state there is something you do not want done, or unless you tell [medical staff] you want to focus on quality of life."

Many healthcare professionals, she explains, do not realize that the let's-throw-everything-at-it approach can have a downside on one's health and make that option a poor choice. "So often," she notes, "we are so focused on the disease, that we forget to focus on the person."

By the time she was diagnosed with cancer, Berman already had spoken with her family about what she would choose in the event of a chronic illness. Braced for and respecting her wishes, Berman's family immediately supported her decision to opt against invasive treatments -- including mastectomy, radiation and chemotherapy. Berman's daughter even agreed it was "a no-brainer" to proceed in palliative mode, to do everything possible to support Berman's quality of life, instead of going through the agony of trying to cure an incurable disease.

Between conventional medicine, clinical trials and complementary and alternative medicine, treatment options are ever-expanding. Against this backdrop of possibilities, Berman's mantra rings true: "There are no wrong decisions, only informed decisions." Ask questions, get the facts and make the best decision for you, Berman advises: Ask yourself what you want and what you do not want, then find out exactly what will happen to you while undergoing treatment:

•How likely is it that you will receive benefits from a given treatment?

•What are the probable side effects of this treatment?

•What will life be like during and after treatment?

•What are the costs: financially, emotionally and physically?

Although some friends and family members were confused and upset by my mother's decision to choose a less conventional route, I always respected her thought process, thorough evaluation, and her ultimate decision to maintain her quality of life, despite other people's accusations of "throwing in the towel."

Similarly, "people may think I have given up or I don't want to live," Berman says. "I want to live as long as possible, as long as I am able to feel well for as long as possible.

"My primary goal," she concludes, "is to really maintain what I have, and not lose that."

Earlier on Huff/Post50:

13 Resources For Caregivers
Join A Support Group (01 of13)
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Talking with other people who face the same daily challenges can help caregivers manage stress. Specific types of support groups can vary on a community-by-community basis; check out this Caregiver.com guide to find the right program for you. (credit:Alamy)
Join An Online Support Group(02 of13)
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Caregivers have their hands full and may not have the time to meet with an in-person support group. In that case, an online support group can be a great alternative. (credit:Alamy)
Check Out A Message Board(03 of13)
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Support groups not your thing? You can see what other people are saying about caregiving by just checking out a simple message board, such as this one sponsored by AARP.. (credit:Alamy)
Get Some Help(04 of13)
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You may need to attend an event or simply seek a few hours for some much-needed rest. Eldercare.net offers a Search For Respite Tool or Eldercare Locator where you can find professional help. Also check out this guide from caring.com for more respite-care ideas. (credit:Alamy)
Find An Alternative Transportation Option(05 of13)
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Does your loved one need transportation to go buy food or go shopping? There are numerous van and shuttle services specifically for seniors. Contact your local Area Agency On Aging for one near you. (credit:Alamy)
Utilize Food Services(06 of13)
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Don't have time to shop and cook? Consider a service that will deliver gourmet meals to your home, no matter where you live. For low-income seniors in need, AssistGuide Information Services offers a directory of food services available. (credit:Alamy)
Tap Financial Support(07 of13)
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During the 2009 economic downturn, 1 in 5 family caregivers said their finances were so strained that they were forced to move into the same home with their aging loved ones to reduce expenses, according to a survey by caregiving.org. Some 47 percent of working caregivers indicate that an increase in caregiving expenses caused them to use up all or most of their savings. The Many Strong Support Network has a fundraising tool which allows other people to anonymously donate funds to people who are under financial strain. (credit:Alamy)
Contact A Caregiving Hotline(08 of13)
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If ever you have a question about resources, or need support at a moment's notice, AARP's caregiving support line is available at 1-877-333-5885, Monday through Friday, 9 a.m. to 5 p.m. Senior care advisors for Care.com, also provide free counseling for caregivers, and help them map out the best course of care for their loved ones. (credit:Alamy)
Join A Caregiver Co-Op(09 of13)
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Organized caregiver co-ops can provide an affordable way to coordinate care for your loved ones. Check with local community centers or this Adult Day Care Directory to see if someone in your area has already started one. (credit:Alamy)
Find Housekeeping Help(10 of13)
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Care.com's Senior Care Directory can set you up with a housekeeper, errand runner, pet sitter, or whatever you need to make the caregiving experience a little more manageable. (credit:Alamy)
Reach Out To A Hospital Social Worker(11 of13)
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According to author of "The Medical Day Planner", Tory Zellick, hospital social workers are a great resource for all caregivers. "[Hospital social workers] are always armed with information for your community," said Zellick. (credit:Alamy)
Join A Caregiving Community (12 of13)
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Websites like Lotsahelpinghands have caregiving communities that connect volunteers with caregivers in need of support or help. (credit:Alamy)
Use Family Gatherings To Have Important Conversations(13 of13)
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Family gatherings offer a great opportunity to discuss the future of loved one you care for, says Dr. Bruce Chernof, president and CEO of The SCAN Foundation. The group offers a guide -- "10 Conversations To Plan For Aging With Dignity And Independence" -- to lay the groundwork for these critical discussions. (credit:Alamy)

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