WHAT HAPPENS WHEN A YOUNG NURSING HOME RESIDENT SIGNS HERSELF OUT FROM TWO DIFFERENT NURSING HOMES?
Joel Langsam, LICSW
I have worked as a nursing home social worker for sixteen years and as a community-based clinician for the last three years. I believe that this paper could meet the needs of this audience comprised primarily of nursing home social workers despite the fact the paper is written from my work within the community.
Florida (a factitious name for the character at the basis of this paper) represents a growing number of younger elders in their mid-fifties, early sixties who require extensive mental health, physical and social supports to survive living in the community. These individuals exhibit long histories of both mental illness and chronic care needs along with impaired social networks. In the past, they would have resided in state institutions, which closed their doors to this population in the late nineteen-seventies.
To be eligible for enrollment in the Elder Service plan of the North Shore, a program serving elders living at home, Florida needed to meet the requirements for nursing home placement. But, as cited in the OBRA Regulations in 1987, Florida also has the right to choose whether she wants to reside in a nursing facility. I believe that this right does create ethical dilemmas for nursing home social workers to examine., Clearly every resident's right must occur with some sense of responsibility. Thus, in this paper, my peers and I confront Florida's decision to return to her apartment after signing herself out of two separate nursing homes.
Florida's ego functioning is so limited that, as a team we have had to fully invest ourselves in her care to assure her choice to be home. As long as our network can sustain her, she will staying in her apartment. Otherwise, she will become homeless and eventually admitted to a nursing home. Our team has helped her find comfort within conditions, which remain ghastly to each of us. Thus, nursing home social workers can in addition come to appreciate the role nursing homes play as the final solution to aid people like Florida
Florida and I met during my visit to her two-bedroom apartment in June 2004. Her apartment was in total disarray. As the social worker, I began my work by introducing her to a variety of in home services. I also tried to set up a calendar in her kitchenette to note providers' schedules. The list of services included: home making, home health aides, a companion to take her grocery shopping, a money manager, Life Line, and a discounted telephone service plan via Verizon.
Florida nodded and agreed with me. But, as care providers arrived, she refused their care; assuring them when she was ready she would clean her apartment or take a shower. I found the calendar lying underneath medical supplies and her uneaten food scraps. She even failed to pay her telephone bill, thus losing her Life Line. The plan only lasted two weeks.
Visiting nursing staff came to her apartment every morning to administer her insulin injection to manage her fragile diabetes. The nurses also monitored to make certain that she had an adequate breakfast. One Monday morning in June, the nursing staff reported finding Florida lying on her floor, barely breathing, pale with low vital signs. They called 911 and arranged for the EMS personnel to transport Florida to the local Emergency Room. This led to her first hospitalization and five months of subsequent nursing home placement until October 2004. The team assessed that nursing home placement would enhance Florida's quality of life. The team identified several concerns including her poor physical health, neglect, inadequate support, and a very limited capacity to maintain her apartment.
During this nursing home admission, Florida actually flourished but could only tolerate residing in the nursing home for five months before becoming too anxious, pacing between her room and the nurse's station, asking repetitively when she was going home. The team eventually agreed that she had progressed as far in her care as possible and felt it was time to honor her request.
Florida was aware of her rights and would readily warn the team that she would seek out legal aide if her right to live independently in her apartment was violated. When her level of competency was assessed, she would share the she understood the consequences of her behavior. She recognized that she would further compromise her breathing if she continued to smoke. She understood that she could lapse into a diabetic coma if she continued to purchase sweets or did not maintain healthy meals.
The Housing Authority and the VNA serving her in her apartment complex were unhappy to see her return. The Housing Authority had frequently shared it disgust with the apparent squalor in her apartment. The Housing Authority had attempted to exterminate fleas and cockroaches. But , no one had ever filed for an eviction.
The Housing Authority also pointed to the need to identify a cleaning service to do major chore service in the apartment. Florida's closets were filled with trash. She had not thrown out food in the kitchen cabinets and by this time the food had begun to rot. Half eaten food was often left on the kitchen table for days. Florida's two cats would climb up on the table to eat the remaining food. Florida would remain ambivalent.
The VNA staff were equally traumatized. They found it very frustrating to come into the apartment in the morning, discovering that Florida had slept in the same clothes, often soiled and reeking from urine. She would resist the suggestion that she either take a shower or have staff give her one. Several nurses complained about the heavy layer of cigarette smoke that encased the apartment finding it impossible to breathe as they tried to care for Florida.
In addition, staff continued to identify concerns around Florida's diabetic and respiratory care. As they arrived at her apartment, they often met her coming across the street from the local mini mart either with another pack of cigarettes or munching on a Hostess Twinkie. When her blood sugar was extra low, the staff could never find a carton of orange juice in the refrigerator to treat her diabetes.
Florida's self neglect led to a second hospitalization and subsequent placement in March 2005. Florida only tolerated residing one month in the nursing home. Smoking was forbidden at the home. The team hoped to better care for her respiratory condition by easing her access to cigarettes. But, she could not stop smoking after smoking two packs per day. She began to trade her daily snacks with the CNA staff for cigarettes. Our medical team agreed that it was futile to fight her urge to smoke and discharged her back to her apartment.
The heat and the humidity during the summer of 2005 reinforced the difficulties to keep Florida in her apartment following her second discharge. She needed to walk up a narrow winding staircase to get up to the bathroom. She found it difficult to manage the stairwell but would not utilize a commode. Instead, she became incontinent as she spent her days lying in her couch in the living room area. Her incontinence caused an infestation of fleas to the couch.
The Housing Authority did not want to re-spray her apartment. They saw spraying again as futile as long as the couch was present. But again, no one wanted to remove the couch since it had become Florida's only place to sleep at night. Florida did not have money to purchase a new couch and no one appeared willing to donate one. Thus, the infestation multiplied over the summer months. The nurses eventually refused to return to the apartment, fearing that they would carry the fleas in their hair and clothing to other clients' apartments or home to their families.
Florida's crisis at home created many accusations between agencies. Our ESP team was only supposed to serve as Florida's health insurance provider. The Housing Authority and the VNA began to turn to us to resolve Florida's crisis. The other agencies began to telephone my office almost daily. It became more difficult to set limits on my scope of involvement. It was also difficult to watch Florida decompensate. The situation became reminiscent of the struggles I faced to structure my role previously as a nursing home social worker. Although, I successfully managed to involve our PCA staff, they often questioned how much they should provide Florida since she was not willing to help herself.
I realized that I could not trust Florida alone to take ownership for her hygiene and the care of her apartment. She required a clinician to visit her regularly as the early pioneer friendly visitors did at the turn of the last century. I had to gradually develop Florida's trust in me so I in return could help her.
I hired a cleaning service to clean Florida's apartment. Personnel kept resigning due to the extent of the work. The staff would clean the surface areas without addressing the underlying clutter. Staff reported that Florida declared that it was not necessary to throw out the rubbish. They feared disturbing her privacy. One day, I did a thorough cleaning with a staff person. We found cans of food rusting in the kitchen cabinets. Some of the older cans had begun to explode. Their contents had begun to drip unto the shelving. I assured the person that we were not harming her by removing these cans. Florida remained on her couch through this exchange staring at her television set. She was ambivalent to our disposal of these cans.
I then became determined to locate a cot, in an attempt to persuade the Housing Authority to re-spray Florida's apartment. A PCA eventually donated a small cot. Our maintenance man and I carried the sofa out to the trash. I persuaded Florida to give me some money. I went out to Bed, Bath, and Beyond to purchase a set of sheets, pillows, pillow cases, and blankets.
My site supervisor and I were able to persuade Florida to attend our day program on Mondays Wednesdays, and Fridays to receive a shower. She also gave us cash to purchase new clothing for her to wear. Staff sometimes put rouge on her cheeks.
We wanted to help Florida use her cash to purchase food and other household supplies. I began to meet with Florida to provide me with money after she cashed her Social Security check. At first, she insisted that she handle her own shopping. She also stated that she required money to pay her rent and telephone bill. Although she did manage to pay her rent, her telephone service with Verizon remained disconnected for non -payment. She would often give her cash away. She eventually let me purchase groceries for her every week.
Together, we planned a grocery list. Each week, she requested a pre-cooked barbecue chicken, a box of instant potatoes, a gallon of milk, a loaf of bread, butter, a box of Cheerios, a gallon of orange juice, and a pound of bologna.
Unfortunately, nothing was sacred. Items we purchased disappeared or were misplaced. We still received complaints weekly from the VNA. The nurses still found it difficult to treat her diabetes without the right food. They worried that they would lose their licenses, Florida's incontinence continued to also frustrate the staff.
In March 2006, our team met with an ethicist to present Florida's case. The ethicist shared his respect for our work to give our participants the same values we wanted for our families and ourselves in our homes. But, he also recognized that Florida would never be happy living outside her apartment. I acknowledged a past experience of taking her to visit a group home. I was excited at the prospect of locating her to a better home. But, she remained completely indifferent to the experience. The ethicist remarked that Florida had found security in a setting which, based on our values, we found disgusting and inhumane. He felt that it was important for the team to aid Florida in maintaining her happiness and security in her residence. He encouraged ESP to continue to provide her with all the services we render her daily to ensure she will be able to live in her apartment as long as possible. The ethicist acknowledged the stress we were confronting as a team as outside providers.
One day, he said “the eleventh hour will come and she will need to be rescued”. She will no longer be able to live in her apartment. We will need to make a decision for her to move into a long term care facility. Something will happen to trigger the need for placement. She will suffer from an episode of respiratory distress or lapse into a diabetic coma. She will not be able to rebound. The Housing Authority for some reason might evict her, leaving her homeless. Until then, the ethicist saw Florida as being competent to make the decision to stay in her apartment.
I want to now conclude my paper. But, I cannot end without leaving you in a lurch. Florida's care remains a cliff hanger. We continue to operate in a crisis mode rather that find a way to dialogue to develop a long term service plan. Every agency remains satisfied as long as each problem is addressed and resolved. We proceeded through the month of April unscathed. But in early May, our PCA staff found her one morning lying in her cot, covered in feces. Despite our work to buy groceries for Florida every Friday afternoon, the VNA staff one Monday morning phoned to announce the refrigerator was bare once again. Florida's care continues to both tire and frustrate us.
I leave the audience with several questions to think about and discuss. (1) How many were satisfied with the ethicist's recommendation? (2) How many would favor strongly advocating for long term nursing home placement? (3) How many would have rather fought for Florida's individual rights verses advocating for placement? (4) How many would have well considered the importance as nursing home social workers of continuing to follow Florida in the community as part of discharge planning and the need to work in closer collaboration with community agencies serving elders with chronic mental health needs? We could offer a reward to the person or persons who could resolve this dilemma.
ADDENDUM: Florida maintained her daily routine for a few weeks. VNA staff found her deceased on the floor of her apartment one morning in June 2006 subsequent to a severe cardiac arrest. The staff presumed that she had just returned from her daily visit to the local store having purchased Hostess Twinkies for breakfast.