Marie was a strong-willed 96-year-old whose body was progressively failing her but who’s mind was intact, and had lived over nine years in assisted living. She was mobile because of an electric wheelchair and maintained a satisfactory quality of life. Over the past two years, she had a fall and leg injury that necessitated hospitalizations and transitional care but was able to return to her apartment. However, she now required additional help including nursing and aide support. In March of 2022, she had another event that left her a bit confused and no longer able to safely stay in assisted living. The decision was made by her children to transition Marie to hospice care and unfortunately only one option was available according to the hospital discharge planner – a nursing home memory care unit.
Marie lived a little over 11 weeks in a nursing home under the direction of a hospice service, a part of the HMO under which she received care prior to and continuing after Medicare eligibility.
Two weeks prior to her death, her status changed more dramatically, and she was largely unresponsive. She stopped eating and drinking, and her family worked with hospice to focus the plan of care on her comfort as it became clear that she was transitioning and would most likely die within weeks.
While some individual care providers were caring and attentive, the family’s overall experience was not a positive one and they were put in a position to advocate for basic care causing significant stress. During her last two weeks of life her children kept vigil and consistently communicated multiple concerns with nursing home leaders, hoping to improve her care and support families in the future.
In the prior nine years living in a wheelchair, Marie had a single pressure ulcer that resolved while living independently. Within 2 weeks of arriving at the nursing home (while contracted for the “highest” level of 24/7 care) she developed the first of 3 pressure ulcers. The first two were early stage and healed; the third was significant, complicating her care and pain management.
Family members had to explain the plan of care to each change of shift. Staff were often unaware of Marie’s hospice status nor her regimen of scheduled and “as necessary” pain and anti-anxiety medication dosing. The only training that seemed to be working was staff fear that they would overdose this patient (in spite of her hospice status). Ordered care, including every two-hour turning and repositioning was inconsistent throughout the day and required significant family intervention to make sure care was provided during the night.
Nutrition was also another area that brought significant frustration. Food trays were brought to her room when she hadn’t been responsive or eating for days; and to make matters worse, she was charged for food for the two weeks she was unable to eat, and her contract signed at hospital discharge required the family to pay for daily food for two weeks after death.
Despite having children in dentistry, occupational therapy and a son-in-law who is a nurse, this family had to work harder than they should have had to in order to help their mother have a good death. I know because I am that son-in-law.
This experience of nursing home care is all too familiar. It was hard to tell whether our family’s experience was at all due to changes forced by the pandemic or its effects on our labor economy. The hospice team, who was so incredibly present, communicative, and attentive, told us that this nursing home was one of the good ones. This staff obviously had a lack of education about hospice care and the use of aggressive pain management tactics.
In February 2022, President Biden advanced changes in nursing home care that focused on improving quality (especially staffing) and safety and increasing transparency.[i] These changes are welcome, but what can you do as individuals to assure that nursing home care is appropriate.
Consider asking for help for the following:
? How do you select a nursing home?
? How do you assure that the plan of care is appropriate and being followed?
? How can you advocate without putting your loved one at risk of retribution?
? How do hospice care teams and inpatient caregivers coordinate in achieving plan goals?
At ElderCARE we are advocates to support families during these stressful times, providing education, support and intervention when needed.
by Mark Kirschbaum, RN, PhD
- [i] every nursing home provides a sufficient number of staff who are adequately trained to provide high-quality care;
- poorly performing nursing homes are held accountable for improper and unsafe care and immediately improve their services or are cut off from taxpayer dollars; and
- the public has better information about nursing home conditions so that they can find the best available options.