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Refusing Treatment for Someone with Dementia: Caregiver Knows Best (The Secret of Palliative Care)

“Your mother-in-law needs to go to the hospital for a blood transfusion.” The call came approximately two weeks after Dr. Vicki Winstead’s father-in-law had passed away and five weeks after her mother-in-law had entered a special care assisted living facility (SCALF) with a dual diagnosis of vascular dementia and Alzheimer’s disease. She was 8 hours away at a family function and had to make a quick decision. Mrs. Winstead had been diagnosed 10 years previously with chronic lymphocytic leukemia, a slow-growing form of leukemia and had been without symptoms up until this point. Vicki was in full crisis mode and felt that her only option was to go ahead with the transfusion-whatever it took to save her mother-in-law’s life and unaware of what prolonging her life meant for her.

No physician, nurse, geriatric social worker, or SCALF director had ever mentioned an advance directive or palliative care in the many conversations Vicki (who is also a gerontologist) had with them about her care.  The only exception was a conversation lasting five minutes to add a “do not resuscitate” directive to Mrs. Winstead’s chart.  No one told Vicki that the option of NOT having a blood transfusion might be in mother-in-law’s best interest—especially given the need for hospitalizations and exposure to painful needle-sticks. No one told Vicki that being on a myriad of prescriptions to treat all of her “health problems” might not actually be in her mother-in-law’s best interest. No one told Vicki that the goal of preserving life might not be the most humane goal. No one told her anything. She realized that there were three overarching questions that she should have asked regarding the blood transfusion:

  1. “Is it necessary?”
  2. “What would it mean for her right now and for the future?” and,
  3. “ What decision would she want me to make?”

It was not until about six months later that Vicki decided to initiate a conversation with her mother-in-law’s geriatrician, a conversation in which he seemed genuinely relieved that someone else had begun it.

What Vicki did not know at the time was that her mother-in-law could have benefitted from something called “palliative care.” Palliative care is a philosophy of care. The goal is to treat and remove, or reduce, symptoms that are bothering the person who is deeply forgetful.  This makes sense for family caregivers.  When a family member is diagnosed with any type of dementia, families are faced with challenges for care and symptom management over the course of the disease process–which can be anywhere from 4-10+ years.

So why are caregivers not given the option to choose palliative care? Because of widespread misunderstanding of what palliative care is, even among dementia experts and clinicians—all who think “palliative care” means “end-of-life” or “hospice” care. Nothing could be farther from the truth. Palliative care can include “end-of-life” or hospice care, but this narrow and incorrect understanding of palliative care restricts opportunities for important advanced care planning conversations to occur early in the disease process—AND TO INVOLVE THE PERSON WHO IS NOT QUITE YET DEEPLY FORGETFUL. Another erroneous belief about advanced care planning is that it is a “one and done” conversation; it is crucial that the conversations are open and ongoing. As the person diagnosed with dementia moves from being a little forgetful to deeply forgetful and thus goes deeper into Dementia Land, the pace and content of these conversations may change. In the beginning of the journey through Alzheimer’s World, mammograms and colonoscopies make sense. Tight control of the blood pressure and cholesterol levels help to prevent vascular problems from making the forgetfulness worse.  But as the forgetfulness deepens, things like mammograms, colonoscopies, and even trips to the neurologist become illogical in Alzheimer’s World.   Palliative care or “aggressive symptom management for maximum quality of life IN THE NOW” should guide healthcare conversations and decisions. The family caregiver becomes the person who can best describe what is “maximum quality of life IN THE NOW” for the person who is deeply forgetful. Without these ongoing conversations,   misunderstandings can happen—like it did to Vicki-that result in care that may not be reflective of the wishes of caregivers and persons with dementia alike. The results can include a diminished quality of life or unnecessary and unwanted measures to prolong life.

By Vicki Winstead, PhD and Rita Jablonski, PhD CRNP

This content originally appeared on The Alzheimer’s Reading Room.

Categories: Caregiving Help Palliative Care

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Dr. Rita Jablonski

Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.

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