Thinking outside the box: an extraordinary woman on home peritoneal dialysis.
Abstract: At the home peritoneal dialysis unit (HPDU) of the University Health Network in Toronto, Ontario, we offer training to help patients perform peritoneal dialysis at home with ongoing support, which includes clinic visits and on-call services. Not every patient is able to carry out independent dialysis, however. Additional support at home is often provided in conjunction with Community Care Access and home care nurses. We recently had the privilege to learn from an extraordinary patient, whose special needs provided us with challenges and opportunities. This paper describes the interaction, flexibility and creativity between our unit, home care nurses, the patient and her family. It demonstrates that with commitment, there truly are many ways to solve even seemingly impossible problems.
Article Type: Case study
Subject: Chronic kidney failure (Risk factors)
Chronic kidney failure (Case studies)
Down syndrome (Diagnosis)
Down syndrome (Care and treatment)
Down syndrome (Case studies)
Home care (Training)
Continuous ambulatory peritoneal dialysis (Health aspects)
Peritoneal dialysis (Health aspects)
Author: Harley, Lisa
Pub Date: 04/01/2011
Publication: Name: CANNT Journal Publisher: Canadian Association of Nephrology Nurses & Technologists Audience: Trade Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2011 Canadian Association of Nephrology Nurses & Technologists ISSN: 1498-5136
Issue: Date: April-June, 2011 Source Volume: 21 Source Issue: 2
Topic: Event Code: 280 Personnel administration
Geographic: Geographic Scope: Canada Geographic Code: 1CANA Canada
Accession Number: 259157202
Full Text: Holly (not her real name) is a 33-year-old woman with Down syndrome who suddenly developed end stage renal failure, etiology unknown, in November of 2008. She lives with her parents, both of whom are in their seventies and speak Italian as their first language, with minimal English. Her mother is her main caregiver. She has a supportive older brother and sister who live in the city; however, they do not live in the same home with her. Prior to having to come to the hospital, Holly had a very structured, predictable life, in keeping with her needs. She attended a day program for special adults, was independently picked up and dropped off by bus, and returned home to her familiar environment. Although she understood both English and Italian, she spoke very little, even to her family, and disliked anyone invading her space. Communication with her was challenging due to her delayed developmental age and non-participation in conversation. Thus, it was difficult to ascertain what she understood from the team.

Hemodialysis (HD) was initiated urgently, but she clearly "hated it" and became so anxious and upset that she required full chemical sedation and, on occasion, physical restraints for treatments. On two occasions, she inadvertently removed the newly inserted tunneled hemodialysis lines. Line insertion itself was difficult for her, requiring a general anesthetic followed by a short stay in the intensive care unit. She was exceedingly upset to be in hospital, as it was a strange environment for her. Procedures, some of which were painful, were difficult given her inability to understand what was being done.

Many family meetings were held, and education was provided to the family. It was decided with the family that it would be best for Holly to convert to peritoneal dialysis (PD). PD was felt to be less invasive, could be done at home, and would not require such an intimidating machine and environment as HD. The fact that there is no blood access was also more comforting for her and the family. Our next challenge was to think about the PD catheter, knowing that she pulled at the HD catheter and was very aware and frightened of foreign objects on her body. We have, in the past, utilized presternal PD catheters, so the idea of tunneling a catheter was familiar. The team came up with the idea of tunneling the catheter to a location that she could not see or reach. Our dedicated surgeon, Dr. Todd Penner, stepped up to the unique challenge of inserting her catheter in her back (interscapularly) to decrease the risk of her pulling on it (see Figure 1). Holly loves to sleep on her tummy and likes to sit on the floor, and even in her unconventional positions, the catheter drained beautifully.

[FIGURE 1 OMITTED]

Our entire training protocol had to be continually evaluated and modified. For example, we started with small volumes on the cycler, thinking it would be best for her to have her dialysis through the night while asleep. Unfortunately, she did not appreciate that she was attached to a cycler, and tended to walk away. Clearly, this could cause trauma to her exit site and/or become disconnected and require a dose of antibiotics for a "wet contamination." We then converted Holly to continuous ambulatory peritoneal dialysis (CAPD). The hope was that she would sit quietly during the 20-to 30-minute exchange and at other times be free to walk around.

It is customary for patients to come to the home peritoneal dialysis unit (HPDU) for approximately six to seven days for training as an outpatient but, with Holly, we planned to do her training while she was still an inpatient. Previously, she had a temporary pass and the family had found it intensely difficult to get her to come back to the hospital, so everything had to be done before discharge. We hoped that Holly would become familiar with the HPDU, as she had been having HD for months only in her hospital room up to that time. But Holly had a tour in advance and made it very clear to us that it didn't look very inviting, and she wouldn't come back. Despite a back rub, gentle approach, and advance efforts to make the room look more homey (such as pink curtains, stuffed animals, coloured pillowcases), Holly was clearly agitated and retreated back to the inpatient unit that had by that time become so familiar to her. A cleverly crafted doll was also integral to our teaching plan. Nurse manager Sharron Izatt did "corrective surgery" on a doll to give her an exit site that matched Holly's. However, Holly banished the doll from her room (see Figure 2).

[FIGURE 2 OMITTED]

Our original plan was to have Holly's mother learn CAPD. However, despite ten days of training, she felt she would not be able to cope due to Holly's ongoing agitation during the procedures and her own anxiety. No distraction strategy for Holly proved consistently effective. When she was agitated, she would pull at the tubing, sit on the floor and remove her hospital gown, which naturally distressed her family, and made the experience unpleasant for all.

We recognized that our routine prescription of CAPD exchanges four times per day was not going to work because it requires independence at home. We contacted a PD nurse, Susan Ackerman, from the Hospital for Sick Children, who had experience working with adult-sized pediatric patients. She provided excellent ideas and guidance, and suggested a creative prescription of a short period on the cycler plus two CAPD exchanges. This would allow a home care nurse provided by the Community Care Access Centre (CCAC) "Home Plus" program to go to her home to give two CAPD exchanges and, while there, to disconnect and re-set up the cycler, as home care nurses were permitted to make a maximum of two visits per day for adults. The treatment plan would include nighttime sedation, as needed, to allow Holly to sleep while on dialysis.

Despite the plan, Holly's mother was fearful of leaving her connected to the cycler unattended for any period of time, even with sedation, since her response to sedation was unpredictable. The only other dialysis option was hemodialysis with sedation, but the family was certain they would not be able to get Holly to come for HD three times per week. Again, we met and brainstormed about options for this young woman. We thought we might have to resort to CAPD just twice per day so that home care nurses could wholly manage the dialysis, but were certainly concerned about the impact of under-dialysis, as well as fluid reabsorption from such long dwell times. The family felt that PD was truly the only option for Holly, so we focused our energy on trying to make it work for her. Fortunately, CCAC worked with us for this unique case, and negotiations were done to have a very generous three nursing visits per day. Holly's initial prescription for home was two litres of 1.5% exchanges twice during the day and two litres of 7.5% Icodextrin once overnight.

In consultation with our bioethicist and team, new goals were set. Our primary goal would not be the usual optimal dialysis, but to be home. The secondary goal was quality of life, which would mean not forcing her to take oral medications or even have all three dialysis exchanges. Additionally, CAPD three times per day, as opposed to our usual four, might eventually allow Holly to return to her day program, which she valued greatly. As a tertiary goal, of course, we wanted to prevent over-burdening her mother.

Another team-family meeting was convened to ease the transition home. Fourteen people were present, including home care nurses, an HPDU nurse (the author), a nurse practitioner, nephrologist, social worker, interpreter, Holly's mother and sister, a CCAC case coordinator, and a hospital CCAC coordinator. All of the home care nurses went to meet Holly prior to the meeting. The discharge date was set and all was in readiness at the home.

The home care nursing supervisor later revealed that she almost refused the referral, as she didn't think they would succeed with their philosophy of teaching patients to do their own care and reducing services that was historically the pattern of home care nursing. A very special nurse, Marcela Diaz, a new RN graduate with no previous PD experience, heroically took on the role of being Holly's primary home care nurse, and was educated in the procedures of PD. We all recognized that it was critical that Holly have consistency with the nurses who treated her, given her fear and mistrust of strangers. Being Holly's home care nurse wasn't without challenges, however, as Marcela and her colleagues related that they sometimes needed to climb over furniture in order to follow Holly during an exchange. Their visit times were typically 9 a.m., 2 p.m. and 9 p.m. for exchanges, and Holly's mother assumed responsibility for the PD dressing and oral medications.

Our typical follow-up is based in large part on guidelines developed by the Home Dialysis Interest Group (2002), aimed at consistency in management of patients on PD. The guidelines include fluid assessment and dialysate selection based on assessment of weight and blood pressure. However, Holly is not our typical patient. She doesn't like to be weighed and may, or may not agree to have her blood pressure measured. To say that her management is a challenge is an understatement. We are continuously surprising even ourselves with creative ways to manage her care. For example, she had her first "clinic visit" in her sister's van in the hospital driveway because she refused to set foot back in the hospital. We count ourselves lucky if we can get blood work.

In spite of the obstacles, and "creative care"', things were running relatively smoothly until 16 weeks post discharge when Marcela reported that Holly had cloudy effluent and decreased appetite. We were not able to easily assess her pain, as she is fairly non-verbal. Peritonitis was diagnosed with culture results of Proteus mirabilis and Enterococcus faecalis. Interestingly, Proteus and Enterococcus are not organisms associated with touch contamination, which we initially suspected before the lab results became available. Fortunately, we were able to treat Holly at home with intraperitoneal antibiotics and holding her PD for a short time.

Holly has now been home with PD for two years and two months. We do wonder if the consequences of our altered dialysis regimen and clinic follow-up will mean decreased survival for Holly. Possibly, but it is in keeping with her values and lifestyle, thus we hope the benefits of her outcome outweigh the risks. Holly is at home with family and is content and that has been everyone's overarching goal. She has resumed some of her previously enjoyed activities such as watching television and is eating well, although has not returned to her day program. She and her family are much more familiar and comfortable with PD. Her mother is now carrying out one exchange per day and nursing visits are reduced to twice daily. She has had two more episodes of peritonitis, likely related to dental cavities and broken teeth. She is awaiting dental treatment with general anesthesia and antibiotic prophylaxis.

We have learned so much from this special young woman. Challenges were plenty, but each provided opportunities for creativity, teamwork, goal setting and re-setting and, indeed, "thinking outside the box."

Acknowledgement

The author would like to acknowledge the support and advice she received from Diane Watson and Betty Kelman, Nephrology Nurse Practitioners at University Health Network, Toronto, for editing the final version of this manuscript.

Copyright [c] 2011 Canadian Association of Nephrology Nurses and Technologists

Reference

Home Dialysis Interest Group, formerly City Wide Peritoneal Dialysis Interest Group (CWPDIG), Greater Toronto Area. (2002). Fluid Assessment. Retrieved from http://www.pdinterest.ca/guidelines

Lisa Harley, RN, BScN, CNeph(C), Staff Nurse, Home Peritoneal Dialysis Unit, University Health Network, 200 Elizabeth Street, Toronto, ON M5G 2C4

Address correspondence to: Lisa Harley, RN, BScN, CNeph(C), Staff Nurse, Home Peritoneal Dialysis Unit, University Health Network, 200 Elizabeth Street, Toronto, ON M5G 2C4

E-mail: Lisa.Harley@uhn.on.ca
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