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Linda English, whose parents were both Willamette Valley Hospice clients, displays a book of their life together at her home in Dallas May 2. Of her mother's condition after contacting WVH, English said, "Once they were involved, the pain was under a lot better control. She just did so much better."
May 08, 2012
WEST SALEM -- Most people plan ahead for college, their wedding, for the birth of their children, their retirement and maybe even for their funeral.
But what about the final months of life?
Planning for end-of-life care and decision-making is often overlooked until the last minute, according to a study conducted by Willamette Valley Hospice (WVH), a nonprofit hospice provider based in West Salem that serves Polk County.
Focus groups and a survey of seniors and caretakers 40 years old and above also revealed a lack of knowledge about options for end-of-life care.
"We plan for a lot of major life events, but don't do a lot of planning for the end of life," said Melissa Lindley, community outreach coordinator for WHV.
According to the survey conducted in 2011, about a third of people interviewed said they weren't aware they could provide instructions for their care when they are no longer able to make decisions for themselves, called an advance directive. Of those who did know about advance directives, a third had not yet written one.
Lindley said advance directives created ahead of time save families from having to make decisions in a rush.
"That avoids that crisis decision-making," she said. "The worst time to try to gather all your information and make a really important decision is in the middle of a crisis."
Another common misconception about end-of-life care decisions is that a doctor has to refer a patient for hospice care. Also, many people believe that hospice care is only an option for the final days of life and mostly involves just pain management.
That isn't the case.
Lindley said people can contact hospice providers at any time after receiving a prognosis of having six months or less to live.
Dallas resident Linda English, whose mother and father were both WVH clients, said she didn't know she could have requested hospice earlier when her mother was dying.
She wished she had.
Her mother, Ginger Jefferson, had a stroke in 2004 and suffered from pain for months afterward until her hospice caretakers stepped in.
"Hospice was involved in the last month of her life," English said. "Once they were involved, the pain was under a lot better control. She just did so much better."
More than just helping relieve her pain, English said her mother's hospice team answered questions and provided bereavement counseling for her family before and after her death.
Four years later, her father, Dale Jefferson, decided to not seek treatment when cancer he had previously treated returned.
The family didn't wait to get hospice involved.
Hospice teams are not just limited to doctors and nurses. Social workers, spiritual counselors, bereavement counselors, and massage and music therapists can be requested. Trained volunteers can provider caregivers and family members a break, as well.
People can use all services available or very few depending on their needs, Lindley said.
"Hospice is about people's individual choices of how they want to live the last chapter of their lives," she said.
English said her father looked forward to speaking with his spiritual counselor and sharing stories of his life with those who visited him.
But she said probably the most critical service hospice provided for her father was the most intangible.
"My father, he had lots of questions and I think they kind of guide you to getting your life together," she said. "My dad and my mom both were so at peace and very comfortable. I think they had shared what they wanted to share and they knew what was ahead of them."
Independence resident Shone Stagg, another WVH client, said the service was not only critical to her mother, father and brother's comfort in the final days, but also to her as a caretaker.
She said the support of the hospice team and the care they provided was irreplaceable.
"My hospice nurse became like my sister," she said. "They are absolute angels."
And for her father, life saving, in a sense.
Stagg's father was on hospice twice and the first time his caretakers convinced him to seek further treatment.
"Hospice isn't just about resigning to the end of life, but to help you live," Stagg said, noting her father took the advice and lived another year and a half before needing hospice for a second time. "And he had a good quality of life."
For both Stagg and English, their relatives' hospice team became like trusted friends and family members.
English added that her father's nurse gave her the gift of being with her father in his last minutes, something she hadn't been able to share with her mother.
She said, toward the end of his life, her father had made the decision to stop eating. She spent every day with him after that.
English and her husband were with him on his last day, but decided to leave the room briefly. English said his nurse stopped her and said, "You may not want to leave right now."
She went back into the room and witnessed her father's final breaths.
"I had my head on his chest when he took his last breath," she said. "My husband actually got to see his face and said just before he took his last breath, he smiled. I wouldn't trade that for the world."
Did you know?
* An advance directive provides instructions for your end-of-life care and decision-making when you are no longer able to make decisions on your own.
* You don't have to wait for a doctor to refer you or a loved one for hospice care. People with a prognosis of six months or less to live qualify for hospice and can request care on their own.
* Hospice can provide care in your home, assisted living facility or nursing home.
* Hospice teams include more than just doctors and nurses. Social workers, bereavement counselors, music and massage therapists, spiritual counselors, dietitians and even pet therapists can be available to clients. Hospice aides can help with bathing and personal care and trained hospice volunteers can offer breaks to caretakers.
* Most insurance plans, Medicare, and Medicaid cover hospice. However, hospice care is available no matter a person's ability to pay.
For more information about services available or for advice on preparing an advance directive, contact Willamette Valley Hospice at 503-588-3600 or at wvh.org.