November 6th, 2010 at 2:14 am
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National Hospice Month a Good Time to Evaluate Policy for Dementia Patients

by Carol Bursack

Both of my parents suffered physical as well as mental anguish for years before their deaths. As their pain grew more intense, and the evidence pointed to impending death, we made the choice to ask our local hospice for help. Rarely in my life have I been more at peace with a decision as I was with that one.

Hospice worked seamlessly with the nursing home staff, so my parents had familiar people to care for them, as well as more caregivers in the form of hospice nurses, volunteers and a second chaplain.

The site recently published an article that gives me hope that people like my parents can benefit from hospice care earlier in their illness than in the past. The article, titled Modify hospice eligibility for dementia patients, says Institute for Aging Research study: Preference for Comfort, Not Life Expectancy, Should Guide Care, confirms what I’ve known to be current policy. The article states:

“Currently, patients requesting hospice services must be certified by their physician to have six months or less to live, and must sign a statement choosing comfort care services in lieu of curative treatments.”

This policy may work well for someone with cancer, but it’s not designed for people with Alzheimer’s or other terminal dementias. According to the article, a new study, published in a recent Journal of the American Medical Association by the Institute for Aging Research at Hebrew Senior Life, has found that “The system for hospice admissions for patients with advanced dementia, which is a terminal illness, should be guided by patient and family preference for comfort, not estimated life expectancy.”

I couldn’t agree more. My dad didn’t have Alzheimer’s, but he had lived a full decade with severe dementia brought on by failed brain surgery. As dad aged, his other health issues caused physical pain, and his dementia became a major factor in his declining health, to say nothing of his quality of life.

Dad’s body language indicated extreme pain, yet it took nurses who cared for dad on a regular basis, plus determined family members to finally get a doctor to actually take Dad’s pain seriously. Once that happened, and Dad was placed under the care of hospice, Dad lived his last months in a peaceful, pain-free mode. He died peacefully and naturally in my arms when his time came.

My mother, who had endured physical agony for years, also had a type of dementia. After seeing Dad’s care handled by hospice, she said “I want that, too.” As Mom’s time to die came near, we signed her up for hospice care. Under their care, she was nearly pain free until her death.

Words can’t express the gratitude I feel toward hospice for their tender care and compassion toward my parents in their time of need, though I tried my best in the article Hospice Care as Seen by a Grateful Daughter.

Dementia patients need advocates to help them get the kind of care they deserve. They often can’t speak up for themselves, so we need to advocate for them. They deserve comfort care for however long they live. Let’s hope this worthy study by the Institute for Aging Research carries a lot of weight. Our elders deserve the best quality of life they can have.

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