Is your hospice caring for a patient with dementia? If you aren’t yet, you will be. With dementia diagnoses on the rise, it’s important for patients of sound mind to document the medical care they want, thus ensuring those end-of-life wishes are honored and respected.
Currently, dementia is the sixth leading cause of death in the United States. In the coming years, an increasing number of people will experience dementia. Worldwide, the number of people living with dementia is projected to increase from 47 million in 2015 to 132 million by 2050. In the United States more than 5 million Americans are living with dementia. By 2050 that number could rise to as high as 16 million.
Family members and clinicians are often unsure whether the care they provide for such patients is the care that patients would have chosen. Across the care spectrum, including skilled nursing facilities, hospital wards, intensive care units, and outpatient clinics, family members and clinicians commonly encounter this dilemma.
Dr. Barak Gaster, an internist at the University of Washington School of Medicine, spent three years working with specialists in geriatrics, neurology, palliative care and psychiatry to come up with a five-page document that he calls a dementia-specific advance directive.
In simple language, it maps out the effects of mild, moderate and severe dementia, and asks patients to specify which medical interventions they would want — and not want — at each phase of the illness.
“Patients stumble into the advanced stage of dementia before anyone identifies it and talks to them about what’s happening,” Dr. Gaster said. “At what point, if ever, would they not want medical interventions to keep them alive longer? A lot of people have strong opinions about this, but it’s hard to figure out how to let them express them as the disease progresses.”
In the State of Texas dementia specific directives can be added as a supplemental request in the Additional Requests section on page 2 of the Directives to Physicians and Family or Surrogates form. After signing and dating each page of the supplemental dementia-specific directives, be sure to make a note in the Additional Requests section of the Directive to Physicians and Family of Surrogates form that a supplemental request is attached.
In the State of New Mexico you can add dementia specific directives on page 4, in the Part 2: Instructions for Health Care – (10) Other Wishes section of the Optional Advance Health-Care Directive form.
No doubt, talking about end of life choices can be tough. However, discussing how you chose to live at the end of life with loved ones and healthcare professionals has proven to ease anxieties and reduce stress – for everyone! The truth is it’s better to have these conversations before or at least at the time of diagnosis to help patients clarify the quality of life they want at the end of their life.
I encourage you to take the next 15 minutes to download and read the documents above so you will be able to guide your patients on how to have the conversations that will lead to their end of life wishes being documented. In doing so, we can all work together to ensure that their wishes are honored and respected.
Live in Central Texas? Join me on Saturday, June 29 from 10:00 am to 3:30 pm (lunch provided by AARP of Central Texas) at the Circle C Community Center in Austin, Texas for The 3 Ds of Advance Care Planning: How to Decide, Discuss and Document Your End of Life Wishes™ in-depth workshop. Registration is free. More details at www.KitchenTableConversations.org
Garrick Colwell has been a Hospice Volunteer since 1987, serving as an on-call hospital and hospice chaplain.
Garrick is a Respecting Choices® First Steps® Advance Care Planning Certified Instructor and Facilitator. He is co-creator of Kitchen Table Conversations, a nonprofit providing education and resources that empower people to have end of life conversations through Advance Care Planning Made Easy™ a monthly, online webinar discussion and live workshop program titled, The 3 Ds of Advance Care Planning: How to Decide, Discuss and Document Your End of Life Wishes™.
As a Certified Grief Recovery Specialist, he co-created with Hospice Austin Conversations On Grief, a monthly online grief support program.
Garrick is currently studying with grief experts David Kessler and Alan Wolfelt, Ph.D. In August of 2019 He will receive a Death and Grief Studies Certification from The Center for Loss and Life Transitions.
Since 2014 Garrick served as a Patient Advocate, fulltime caregiver and end of life companion to his late wife Kinsloe.
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