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Kathryn's Story

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NRSKarenRN has 43 years experience as a BSN, RN and specializes in Vents, Telemetry, Home Care, Home infusion.

5 Followers; 10 Articles; 167,010 Profile Views; 15,070 Posts

Kathryn B. was a 36 year old wheelchair bound women diagnosed with Multiple Sclerosis (MS) since age 18. She lived in a row home in the Philadelphia, had a first floor setup with hospital bed, wheel chair and stair glide to second floor . Kathryn was alert, talkative wheelchair bound and required total care. I first met her in the fall of 1995 performing HHA supervisory visits. Her primary caregiver was her pregnant 18 year old daughter, Janet. Her husband had left her 92 and had custody of her 13 year old son who visited sporadically. She received homecare services through my employer, a Medicare certified home health agency under PA's Medical Assistance (MA) program due to urinary incontinence requiring indwelling foley catheter. Kathryn had a Home Health Aide (HHA) 3 times a week in the evening (PM) for personal care and Registered Nurse (RN) visits q 2 weeks: one supervisory and another two weeks later for catheter change. She also received Attendant Care HHA service 6 hrs per day, 5 times a week through another agency. I became her primary RN Case Manager in April 1996 after her previous RN left the agency.

Upon my first visit in April, I was surprised to find Kathryn now refusing to get out of bed stating "too much effort". Janet now had a 2 month old daughter. The hospital bed formerly in the middle of the living room was pushed against the front wall of the living room under the front window to make way for baby supplies. The home was clean and uncluttered.

Over the next 9 months, Kathryn developed two Urinary Tract Infections (UTI) requiring hospitalization and developed multiple small stage 2 decubiti. By September 96, RN visits were increased to 1-2 times a week. I usually visited at 2 PM and would find the catheter bag filled to the top, with urine often backing up the entire tube to bladder. Upon med review and check of prescription bottles, found med's were frequently not refilled without written reminders to Julie or calls to Primary Care Physician (PCP) for refills. Ordered meds were often not picked up till my next visit a week later despite the pharmacy being located at the end of the street! I started using a black and white copybook to keep a written record (since notes misplaced) of meds needing refills, supplies I ordered to be delivered and notes to aids and daughters. It was a success in improving communication so I started using a copybook with all my long term clients.

Much education was provided to patient and daughter regarding prevention of UTI, skin breakdown and signs and symptoms of complications/exacerbation of MS. A Certified Enterostomal Therapy Nurse (CETN) consultation resulted in a 6 month trial of a ROHO mattress for pressure reduction (worked great!) and use of Tegaderm dressings for legs and Duoderm dressing for sacrum changed q 3 days. Janet learned wound care and proper positioning /use of pillows for pressure reduction. Kathryn was disinterested or ignored whatever was said to her and often, while I performed sacral wound care while she was side-lying, would elevate the HOB so she could view the TV set! When I visited in the morning, her Attendant Care aide was observed giving proper care, feeding and bathing Kathryn. All decubiti were healed in January 1997.

By Spring 97, the home situation changed. Her ROHO mattress was discontinued as end of trial period. MA would not cover rental of a low airloss bed but only pay for a 2"alternating pressure pad mattress, insufficient for her needs. I purchased a 5" eggcrate mattress for discounted price of $25.00 from a DME company I heavily used after explaining patient's predicament. Julie's boyfriend dropped out of college and was living in the home. Kathryn was having increased leg muscle spasms and her Baclofen dose was increased. Stage 3 buttocks decubitus then several Stage 2 leg ulcers developed. She was constantly hungry in the afternoon and requesting to be fed: minimal food was seen in the home. Kathryn began to lose weight. My agency's aide PM starting bringing food for her. She refused Metamucil her standard bowel regimen, developed abdominal distension, fecal incontinence with fecal impaction requiring weekly disempaction prior to wound care. Kathryn told me she preferred this to lying in stool. Her sheets had ripped due to repositioning and Janet said she couldn't afford to replace them. I bought a set. The PM aide often had no clean linens. We would use damp top sheet on bottom and covering dampness with chux and cover Kathryn with only a blanket. The aide would wash bottom sheet and washcloths in bathtub, air dry on shower rod as no washing machine or dryer. I learned that MA would cover chux and diapers with a prescription -quickly obtained. I made Janet call for refill of supplies & drugs during my visits as she stopped doing this on her own. Baclofen doses began to be missed "Mom didn't want to take the pills" Kathryn's legs became increasingly contracted due to spasms and range of motion (ROM) was necessary in order to move them to in order to perform wound care.

In May 97, I noted the Attendant Care aide wasn't present when I visited at noontime on several occasions, "Oh, she's coming earlier" Kathryn stated and saying the aide stayed in the house "about 2 hrs". A call to the other agency revealed that the aide was documenting being at two cases simultaneously for 6 hours (under different supervisor's) and was fired. Janet covered for the aide by signing the time sheet "desperate for help". A subsequent aide (age 19) as hired and moved into the home after a month! By summertime, this aide was rarely seen in the late mornings and the agency was again notified.

Janet now had a nighttime job and reluctantly came downstairs during my evening visits. Kathryn was often left alone with the front door kept open; She'd call out the open window so neighbors passing by could come in and help her despite living in a high crime area.. I managed to get the sacral decubitus healed but as soon as the leg ulcers healed, new blisters would occur due to friction or skin touching with 1 or 2 new ulcers developing weekly in different locations not protected by Tegaderm. Pillows supposed to be between the legs would be found at the foot of the bed or on the floor.

One day Kathryn asked me to get her something to eat. A check of the kitchen found only baby food in the home. Having served as an ombudsman for one year in my own county, I was familiar with PA state laws protecting the elderly. Because Kathryn was between age 21-65, she didn't qualify for protective services. However, I called protective services in Philadelphia seeking advice and was told about the Office of Consumers and Employable Adults Needing help (OCEAN) group which advocates to prevent starvation and homelessness in this age population. Upon a call to them, I discovered that Kathryn had a case manger through them for 3 years!!! He promptly brought out food in May.:kiss

By June 97, Kathryn's heels were touching her buttocks. The PCP made a joint home visit with me. We discussed unmet care needs with patient and daughter, recommended nursing home placement for respite but Kathryn insisted on staying home. Janet's baby was now getting all the attention that Kathryn formerly received: baby food, new clothes and toys were seen periodically in the home as she grew. But food and supplies my client needed weren't being obtained. Things came to a head, when I visited in July 97 and found Kathryn lying in almost a quart of dried feces, flies circling overhead despite fly strip, bedside foley bag leaking at seams due to fullness and dressings dated from my visit 10 days previously. The kitchen area off the living room was trash strewn with soiled diapers and the downstairs reeked of urine and waste. :angryfire Janet came downstairs after multiple calls up the steps and promptly broke down crying: "I've been caring for my Mother since I was 10 years old and with the baby, I just can't do it anymore".

I had never stopped to think of this aspect: Janet was a young, long term caregiver! Iknew she was exhausted but failed to take into account how long she'd been caring for her mom. I felt very guilty for not recognizing this sooner. After a long talk, Janet agreed that Skilled Nursing Facility placement, at least temporarily was needed. The agency's MSW was contacted to begin the paperwork. My next visit two days later revealed that Kathryn had picked up a stomach virus from her son who despite being sick, had visited on the weekend. She was only taking liquids, unable to keep solids down.. Her weight was now about 100 lbs, a loss of 30-40 lbs over the past three months Vital signs were stable, she was not dehydrated and refused hospitalization. I planed a revisit in two days. Upon my return, Janet told me Kathryn had been hospitalized when neighbors heard her crying for help, came to investigate and were shocked by her appearance and condition. Janet stated she'd talked with the hospital social worker and told her Kathryn needed placement because she couldn't care for her mother any longer. I offered Janet emotional support over this difficult decision. Later, I called the social worker at the hospital informing her of my concerns and the current home situation.

Imagine my shock and surprise when a week later I got a page at 2 PM from my agency informing me that the hospital called to resume homecare and should they accept Kathryn back? :nono: :nono: :nono: My supervisor was leery to accept the client due to all the advice she had dispensed regarding handling of this case. I immediately called Janet who stated that the hospital told her she had to accept her mother back as Kathryn was competent to make decisions and was refusing SNF placement. I told Janet don't answer the door if an ambulance arrived and that she had a right to change the locks on the front door. I called Kathryn's OCEAN case manager who said he had visited her at the hospital but his hands were tied as it was her right to choose where to reside. I demanded to speak with his supervisor who stated because of her age there were no protective laws. Quickly, I contacted her PCP who stated he would refuse to accept Kathryn as a home care client after hospital discharge due to safety reasons and would call the hospital. I discussed the case with my Director of Nursing (DON) and informed her that I was going to file charges with the Philadelphia Police Department, the District Attorney's office and contact all the television stations in Philly due to the hospital and outside agencies allowing and perpetuating neglect of this patient. She backed my decision after reviewing my documentation. At 4PM, I called the Social Work Supervisor at the hospital, informed her of my conversation with the DON and decision to contact police and news media. Immediately, I was told the discharge was on hold. During a follow-up call the next morning to the SW department, they informed me that Kathryn was being placed in a local nursing home; a call to Janet confirmed this statement. I did speak with a policeman who took a statement to keep on file but didn't follow-up with the District Attorney or television stations. A month later, I saw Janet in the neighborhood while visiting other client's and spoke with her: Kathryn was doing well in the nursing home, gained weight and was out of bed in a reclining wheelchair.

The goal of home health nurses is to help families learn how to care for their loved ones at home. For clients with chronic illnesses, we help families keep loved ones OUT of nursing homes. In this case success was getting a client INTO a nursing home. Because of Kathryn, I learned how to negotiate with Medical Assistance case mangers maximizing authorization for homecare visits, obtain needed supplies, contact appropriate resources, document and handle problems, and learned how to advocate for clients & families. These skills have come into use many times in my current agency. The Clinical Managers often call me to "pick my brains" and I readily pass information on that I learned from caring for this patient, helping to prevent other clients from entering nursing homes.

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345 Posts; 3,983 Profile Views

So, no charges were ever filed against the daughter? I understand her plight, but some of those things were criminal negligence.

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198 Posts; 5,904 Profile Views

Thank God Kathryn had such a wonderful dedicated visiting nurse. You showed compassion not only to katyryn, but also to her daughter.

Janet was overwhelmed with the responsibility of caring for her mother and her child. Janet had taken on much to much responsibility. She had never been allowed to be a child. As a child she was responsible for the care of her mother. Her mother was unable to give her the care she deserved. Although

her mother loved her she was asking to much of her daughter. You were an angel to step in and make the hard decision that Kathryn would be better off in a Nursing home. I'm sure in time everyone will realize it was the best decision for all.

To the previous post. Please don't be so hard on Janet. She stated she had been responsible for helping to care for her mother since she was a child.

Janet is a teenager with tremenous responsibility. She had never been allowed to be a child. She had always had adult responsibilities.

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wonderbee is a BSN, RN and specializes in critical care; community health; psych.

1 Article; 2,212 Posts; 13,094 Profile Views

Mercy, Janet and Kathryn were in a terrible plight. I sympathize with both of them. It wouldn't be so bad if this were an isolated incident but sadly we all know this sort of problem exists all too often. It took someone to really care to make the necessary change. You did a very good thing.

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jschut has 20 years experience as a BSN, RN.

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Wow. :sniff:

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jnette has 10 years experience as a ASN, EMT-I and specializes in Hemodialysis, Home Health.

4,388 Posts; 26,173 Profile Views

Heart + Effort = SUCCESS. :balloons:

Wonderful. Wonderful. Wonderful. :)

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11,191 Posts; 54,550 Profile Views

it is a wonderful story but still, so sad.

thank God for your persistence Karen. :balloons:

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4,491 Posts; 30,506 Profile Views

Karen, I am heartened but not surprised that you are a courageous advocate for patients.

I am so proud of what nurses like you do. In these times we can't just "go along".

Thank you and all of us who do the right thing.

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112 Posts; 2,069 Profile Views

Thank you for posting your case. I worked as a social worker in the home health care industry for 5 years and I have seen many cases like this. I'm glad that you were finally able to get this client the help that she needed but must point out to you that all too often, home care social workers are called in way too late for crisis intervention rather then early on when social work intervention may have been of more benefit. The psycho-social stressors in this case are all triggers for early MSW intervention: long-term disability, poverty, inability to care for self, dependency on an 18 y/o caregiver, major change in social situation that impacts caregiver's abilities (birth of child) and obvious changes in medical condition.

MSW intervention early on, might have been able to enhance the daughter's coping abilities. I would have provided an extensive evaluation to assess the daughter's coping abilities and to determine if other formal and informal supports might be available. Counseling regarding development of a realistic plan to manage the clients care needs would also have been provided.

Unfortunately, short-sighted thinking on the part of Medicaid as well as Home Care Agency administrators often make it very difficult for the home care RN to ensure that her patients receive necessary social work intervention.

Whenever possible, bring the MSW in early. An interdisciplinary approach is the best way to meet a clients challenging and multi-faceted needs.

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32 Posts; 1,362 Profile Views

How sad it is! :crying2: So glad they found someone who cared. I think you did a great job...

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