Senior moments: Advanced Care Planning's story of Ruth is an unforgettable one By JACKIE BYRD
A column for seniors and those who love them
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Old age, believe me, is a good and pleasant thing. It is true you are gently shouldered off the stage, but then you are given such a comfortable front stall as spectator. - Jane Harrison, English scholar, writer and archaeologist
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The annual Conference on Aging and the Law held in Virginia, is sponsored by seven senior advocacy organizations including AARP and the National Academy of Elder Law Attorneys. It is two days full of information regarding growing older in this country, and how to assist people who are doing it (growing older, I mean). Among the vendors at the conference is an organization called Advance Care Planning. From this company, I heard a story I can't forget. Apparently, column readers can't forget it either, as we receive many requests to repeat it. They call it Ruth's Story.
Ruth, age 82, has slept with six down-filled pillows since she was in her 50s. Her grown children are not aware of this, and her husband is deceased. Due to mild arthritis, Ruth is only comfortable and able to sleep if the pillows are positioned in such a way that they support her arms and legs. Following a hip fracture and subsequent hospitalization, Ruth goes to Golden Years Nursing Home for an anticipated five-weeks' stay for rehabilitation. She is assigned a room and given one pillow for her bed. Ruth is understandably disoriented by her recent injury, hospitalization and transfer to the nursing home, and she already suffers some mild short-term memory loss. The physician she just met on admission to the nursing home has diagnosed her with Alzheimer's disease, even though he has scant information about her history.
Staff members interpret Ruth's request for six down pillows as confusion, charting this matter in her record. Her family consists of two daughters, one in Texas and one in Illinois. Staff members help her phone them but her continued requests for the pillows are both annoying and confusing to everyone, and Ruth's inability to communicate effectively over the phone is increased by her moderate hearing loss and growing frustration over her inability to sleep. In an attempt to address Ruth's needs, the physician orders some sleeping pills for her and she sleeps well for the first time since admission to the facility. However, she sleeps so soundly that she is incontinent during the night.
Thinking they are sparing Ruth the embarrassment of incontinence, staff members then begin the use of adult incontinent briefs. Ruth tries to explain to the staff (who believe her to be somewhat demented) that she can use the bathroom, but they are not responsive to this. Ruth, who is fully ambulatory following a period of rehab for her broken hip, makes repeated attempts to get to the bathroom by herself to show the staff that she simply doesn't require the adult incontinent briefs, which everyone calls diapers. Her attempts for unassisted ambulation are interpreted by the staff as further evidence of her confusion, and they place an alarm on her bed and a seat belt in her wheelchair. It is unclear why and when she was given a wheelchair.
So Ruth, who previously lived independently in her own home, is now both chemically and physically restrained, has been given a diagnosis of Alzheimer's disease, wears diapers and is essentially wheelchair bound. She is depressed and despondent. Ruth's five-week rehab stay is now anticipated to become a permanent placement owing to her supposed need for 24-hour care and supervision. Why? Because she needed six down pillows to sleep and no one was aware of this or was held accountable for acknowledging it.
People at Advance Care Planning say that this and similar scenarios happen hundreds of times daily in nursing homes throughout the country. ACP exists to "ensure that your personal lifestyle desires are known and respected by caregivers in the health care setting." ACP gathers, organizes, stores and disseminates information for the elderly who may in the future depend on others for their care. The care plan identifies the individual's specific needs, desires, habits and preferences, thereby enabling family members and others to provide care in a uniquely personal way.
Information gathered by a company consultant will include biographical data, medical history, values and preferences, lifestyle and end-of-life decisions. For the biographical section, they will ask about your history, family, careers, travel, organizational memberships, fondest memories, turning points in your life, etc. This process itself provides a unique opportunity to document your life's experiences and accomplishments for your loved ones and descendants.
All the gathered data are documented and stored online in a secure and HIPAA-compliant system and can be updated as needed. Both a biography and a needs-based care plan are then produced and are accessible to future caregivers via the Internet. The end user, or the end user's representative, will be able to access the individual's care plan at will.
What happened to Ruth is absolutely frightening, and it does not need to happen, ever, to anyone! To find out how to obtain an Advance Care Plan, visit www.advancecareplan.com or call 877-227-7235.
Thank you for reading. See you next week. Stay well.
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The writer, a longtime resident of Bowie, is secretary of the Maryland/D.C. chapter of the National Academy of Elder Law Attorneys and a member of the Elder Law Section of the Maryland State Bar Association. You can e-mail her at jbyrd@byrdandbyrd.com.
