Planning for end-of-life care and including palliative care and hospice can help ease burdens and create comfort.
Barbara Stitzinger called it a "life-changing journey."
She was the primary caregiver who saw her mother-in-law, Elizabeth, through the ravages of age and declining health until the very end. Elizabeth was comfortable, well cared for and at peace when she passed.
"I was with her until her last breath," said Barbara.
Elizabeth died on March 7 at age 92 in the beloved kitchen of the family home where she had lived for nearly 50 years.
Elizabeth's last weeks were the result of thoughtful planning and diligence on the part of her caregivers. Both she and her husband of nearly 70 years, Jim, had living wills that specified that no extraordinary measures be taken if they became seriously ill. They wanted to remain at home.
For about a year the family saw Elizabeth's health waning as she succumbed to heart issues. The family enlisted the help of visiting nurses. Eventually there came a point when they decided to place Elizabeth in hospice care so she could live out the rest of her days on the family farm in Doylestown.
Until several months ago, Barbara had not been familiar with hospice. "I didn't realize the broad scope of care," she said. "But it was all well explained."
"Hospice is that "something more' when aggressive treatment options have been exhausted and your disease has progressed," said Priscilla Kraut, Doylestown Hospital hospice coordinator. "The focus of hospice care is on quality of life while providing excellent symptom management."
The Doylestown Hospital Hospice team includes a patient's own physician, registered nurses, social workers, home health aides, chaplain, bereavement counselors, and trained volunteers. Patients and their loved ones are central to the care plan. The goal is to enable individuals to live as fully and comfortably as possible at home or in a home-like setting such as a care facility.
According to research, most people say they would prefer to die at home, yet only about one-third of adults have an advance directive outlining their wishes for end-of-life care.
Why? Often stated reasons include denial, lack of awareness and confusion. According to the Centers for Disease Control and Prevention (CDC), "Planning for the end of life is increasingly being viewed as a public health issue, given its potential to prevent unnecessary suffering and to support an individual's decisions and preferences related to the end of life." (CDC 2010).
Awareness efforts continue.
Ira Byock, MD, who served as director of palliative medicine at Dartmouth-Hitchcock Medical Center from 2003 until 2013, is an author and public advocate for improving care through the end of life. In a 2012 blog for ABC News he states, "Being prepared starts with a conversation. Illness and dying are only partly medical; they are mostly personal. It's critically important for your family to know what is most important to you personally – in your life."
The Stitzinger family had those conversations. A hospital bed was placed in the kitchen for Elizabeth.
Barbara describes the German-born matriarch as a "legend." She and Jim had five children who grew up with a strong spiritual background and faith. Elizabeth was a tremendous baker who taught Barbara how to cook. "She was a wonderful mother to her daughter and daughters-in-law," said Barbara.
The days preceding Elizabeth's death were intense, she added. Having hospice care helped ease the burden. "I don't know how I would have done it without them."
Doylestown Hospital Hospice has been serving patients and families in Doylestown and surrounding communities for more than 25 years, making it one of the most experienced hospice programs in the region. Last year, Jane Gallant, MD, joined the Doylestown Hospital Medical Staff as director of the palliative care program. While hospice care and palliative care each have their own characteristics, both specialties focus on comfort for the patient and support for loved ones.
"I felt valued," added Barbara.
In addition to a hospice nurse, the health aides, social workers and volunteers provided personalized, compassionate care to Elizabeth. They also cared for Barbara, who felt "safe" even in the middle of the night when she'd call the 24-hour hotline for guidance.
Said Barbara, "Elizabeth was at peace with dying. She was so happy to be home surrounded by those who loved her. Being at peace with your surroundings and yourself is a big part of your end of life."
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