- Meet Consumers/Patients
|Newsletters: Smooth Sailing at the 1996 Oley Conference|
Smooth Sailing at the 1996 Oley Conference
Linda Boutin, HPN Consumer, Regional Coordinator
The Oley Foundation celebrates the successful conclusion of its 11th Annual Consumer/Clinician Conference held June 27 to 29 at the Kona Kai Continental Plaza in San Diego, CA. Aptly named “Sailing into the Future on HomePEN,” the conference turned out to be a perfect mix of sun, blue skies and valuable information for the 300 attendees. Following is a summary of the first day’s plenary session written by Linda Boutin, a new Regional Coordinator in Chula Vista, CA. Join us next year when we move the conference to Minneapolis, Minnesota!
I’ve been receiving the LifelineLetter since the summer of 1980, but this year was the first opportunity I had to attend an Annual Oley Consumer/Clinician Conference. Some combination of either financial or health reasons always conspired to prevent me from attending the first 10 meetings. However, I felt right at home with the other 320 attendees at this year’s conference for two reasons: I knew so many of the names and faces from reading the newsletter for 16 years that no one felt like a stranger and, more importantly, this year Oley brought the conference to my hometown. I would like to share with you a summary of the information I learned from the panel of experts during the plenary sessions on Thursday and Friday.
Thursday morning Lyn Howard, MB, FRCP, FACP, facilitated the discussion on “The Impact of Today’s Research on Tomorrow’s Patient Care.” Her first introduction was Maurice Shils, MD, ScD, who spoke on the topic “Has HPEN Met Its Early Expectations?” She described Dr. Shils as an educator and academic pillar in this field, who discharged one of the first patients sent home on parenteral nutrition in the late 1960s from Memorial Sloan-Kettering Cancer Center (MSKCC), and who initiated the first registry of HTPN patients in 1973. This registry eventually became the Oley-ASPEN HPEN Registry.
Dr. Shils opened his remarks by saying, “This meeting celebrates personal achievement and success in staying alive. On this basis alone, HPEN has met more than its early expectations.” He pointed out that enteral and parenteral nutrition research has a long antecedent of very many investigators making important contributions necessary to reach the goal. He cited as examples: Florence Siebert who in 1923 found the cause and prevention of chills and fever upon infusing patients with solutions containing distilled water; the discovery of the presence of bacterial pyrogen which resulted in safer infusions of glucose and salts; and Warren Cox Jr. who in the 1930s developed safe and effective protein hydrolysates providing amino acids for enteral and parenteral use.
As the head of the metabolic unit, laboratory and research kitchen at MSKCC, Dr. Shils saw much serious malnutrition in cancer patients and initiated efforts to assist such patients by enteral and parenteral feeding. The general aim was to solve immediate problems and proceed from there. He gave as examples of such early efforts: improved formulas in tube fed patients with head and neck cancer, or those with malabsorption caused by bowel resection or radiation enteritis; the use of small bore flexible tubes in place of larger tubes; and the training of selected patients to remove and place the tubes themselves. Today, of course, endoscopically placed gastrostomy or jejunostomy tubes are preferred.
The problems of improving nutrient solutions and infusing techniques in parenteral feeding was more challenging and difficult. All nutrients needed for intravenous use had to be present in safe, effective and stable form, in sterile solutions and had to be approved by the Food and Drug Administration (FDA) since they are classified as drugs. Manufacturers were reluctant to make any changes or add new products because of the lengthy trials needed to convince the FDA.
Dr. Shils gave several examples. The only IV multivitamin preparation available in the 1960s and 70s was seriously incomplete in its contents and contained questionable dosages of some of the nutrients present. There were no commercially available essential trace element solutions of zinc, copper, manganese or chromium. The problems were solved by establishing an expert committee in the American Medical Association (AMA) which developed its formulations and sent them directly to the FDA with a request for formal approval for adult and pediatric multivitamin formulation. These new formulations were accepted and are still in use. The various trace elements also became commercially available.
There were other problems solved by various investigators, but one particular achievement deserves mention. The very great majority of physicians had no experience with parenteral nutrition in the late 1960s and few had any interest or faith in this procedure. The Department of Surgery at the University of Pennsylvania under the leadership of Dr. Rhoads together with Drs. Dudrick, Wilmore and Vars, undertook long term experiments in dogs. These and their clinical studies produced the clinical and laboratory data proving efficacy to skeptics and, equally important, demonstrated that percutaneous central venous catheters placed near the heart permitted prolonged safe administration of parenteral solutions containing high concentrations of glucose. The result was rapid and international acceptance by the medical profession - especially surgeons. This was a major development but did not solve the problem of few physicians having the necessary background or experience. This was solved in many hospitals by the establishment of clinical nutrition teams of physicians, nurses, dietitians and pharmacists to provide the necessary expertise. The development of home enteral and parenteral was a natural outcome of these developments.
“We know enough about the needs of human beings and have the nutrients available to keep them alive and in good health solely through intravenous means,” said Dr. Shils. He added that intestinal transplantation or the use of combined growth hormone and certain supplements to improve the absorptive capacity of the remaining intestine are new modalities that offer additional hope to those who are suitable candidates.
Dr. Shils concluded his comments saying that the probability of long survival for people without serious underlying disease on HTPN is very good, with some patients now exceeding 20 years on the therapy. He stressed that in the present climate of rapid changes in medical care it is important to keep the patient in the circle along with the physician, support staff, family, government, insurance companies, HMOs and support groups. He also said the personality and genetics of the individual patient must be kept in mind when HPEN is involved.
Dr. Shils talk reinforced for me how lucky I am to live now versus a generation ago when my pseudo-obstruction may have killed me in my twenties. It made me remember the many people who have spent lifetimes doing research and trying to develop methods to end the suffering of malnutrition in others. Finally it stressed the importance of my being an informed, interested and involved member of the team to promote my own health.
Marilyn Jarrard, RN, from Smith & Nephew United, followed Dr. Shils with a discussion of “Modern Catheter Dressing Techniques.” She has authored many articles on dressings. To pique our interest, she opened her remarks with the following reminder and challenge, “The policies and procedures you use [for dressing changes] are based on good research. How do you maintain your catheter safely and effectively?”
She stressed that good hand washing techniques are crucial to infection control in all medical situations - especially when handling a catheter. It’s vital to wash your hands for ten to twenty seconds before and after touching a catheter. Important factors to keep in mind with hand washing include washing frequently, washing long enough to ensure disinfection, using the proper cleansing antiseptic agent, and using plenty of friction when washing hands.
She said the agents could be soap and water or an antiseptic solution. The proper antiseptic dispenser aids in hand washing techniques as well. She added that fake fingernails require more friction to achieve disinfection and that rings carry more risk of infection. According to Ms. Jarrard, catheters themselves have a low infection rate if handled properly.
Next she went over the importance of site preparation and cleansing the insertion site. Remember that hair must be removed from the chest with scissors or a safety razor. Depilatories are not useful for this process. The appropriate solutions to cleanse the skin include tincture of iodine, iodophors, 70 percent alcohol, chlorhexidine gluconate and triclosan.
Site preparation techniques include the use of single-use packaging, an adequate amount of cleansing solution, and a mechanical friction rubbing motion while cleansing the site. It also requires cleansing an adequate size area (at least twice the dressing size), using a circular motion over the area, and allowing sufficient drying time (two minutes) for the cleansing agent before applying the dressing.
Ms. Jarrard went on to point out some special considerations which should be kept in mind with dressing techniques. Watch for iodine allergies, and if one occurs, remember there are other good antiseptic agents available. Be careful not to contaminate the dressing before applying it by touching the underside which will be in direct contact with the skin. The dressing has many functions and prevents trauma to the site, so treat it carefully.
She concluded her remarks by describing the three common dressing types now available which are tape and gauze dressings, conventional transparent film dressings, and a new high MVP film dressing. This new dressing reduces the accumulation of moisture under the dressing. She stressed the importance of keeping the dressing dry. Also be careful when removing dressing to keep the skin intact and avoid skin tears which allow bacterial access below the skin.
After all her reminders and tips, I resolved to approach my dressing changes a little more slowly and less by routine. Having fair skin I’m very apt to skin tears, so I decided to remove tape a bit more slowly. Always in a hurry, it is good for me to remember that betadine takes two minutes drying time to work properly.
Timothy Vanderveen, PharmD, MS, from IMED Corporation, spoke next about “The Evolution of Infusion Control Devices: What Does the Future Hold?” He is a charter member of the American Society of Parenteral and Enteral Nutrition (ASPEN) and has authored many papers about nutritional support.
He began his talk outlining the development of parenteral nutrition from the pharmacist’s perspective. This was particularly intriguing after hearing Dr. Shils’ recounting of the early history of intravenous nutrition.
When looking ahead at HPEN in the future, there were many factors Vanderveen thought would affect HPENers. First there is the rapid adoption of capitation, a uniform per capita payment per patient, rather than the more familiar fee-for-service structure of the past. This structure limits the discretion of the traditional physician to prescribe diagnostics, drugs, therapies, etc.
A second feature in the managed care model requires health care professionals to demonstrate cost-effectiveness in treatments. Vanderveen predicts that this will lead to reduced choice for everyone.
He also said the cost of ambulatory infusion devices will come down in the future, but that outcome studies will be required. He concluded his remarks by saying that new technologies of the future will have to prove their effectiveness before they will be adopted.
Vanderveen’s discussion was very entertaining being liberally sprinkled with funny anecdotes and jokes, but gave me pause to think that my life hinges on the balance of the bottom line. This is not a comforting feeling, but I hope the overwhelming compassion of the typical American will keep the health care situation from deteriorating too far.
Wrapping up Thursday’s plenary speakers, Reid Nishikawa, PharmD, BCNSP, FCSHP, spoke about “What’s in the Future.” He said that one of the problem areas included the lack of venous access. The reality is that there are a finite number of sites, and when someone is on TPN long term, they could run out. All efforts should be made to preserve venous access and extend the life of each catheter or port. Limited progress has been made in the ongoing research of catheter materials in trying to preserve venous access for longer periods of time or to reduce complications.
He said that University of California Davis and Deaconess Hospital in Boston, MA, have begun the use of low-dose warfarin to maintain catheter potency. There are some concerns that the long term use of heparin may not be good for bones. More research is needed before heparin can be uniformly eliminated from all TPN regimens.
Also discussed by Dr. Nishikawa was the fact that infections in the long term TPN consumer are the most common reason for hospitalizations. He touched on liver dysfunction as well. Liver dysfunction is not uncommon and often there are reversible causes which can be eliminated. This may reduce the risk or normalize liver enzymes. There remain selected cases where no causative factor can be found.
Most exciting is the idea of getting off TPN, or reducing the amount of TPN required, through improved gut function. He said the bowel adaptation phase after major gastrointestinal surgery occurs over 18 to 24 months. As far as specific fuels that can be provided to further improve function, Dr. Nishikawa mentioned specific gut nutrients such as glutamine. The use of glutamine is still considered investigational and must be used only with physician supervision. This fuel is just as effective when taken enterally as when taken parenterally. Additionally, intestinal growth factors may enhance the function of the remaining bowel. This therapy is also experimental.
He said intestinal transplantation is not for everybody and that patient selection is very important to the success of the procedure. He concluded his talk by saying that there is ongoing research which investigates modifying fat emulsion structurally to avoid overdosing on one specific fat type and to better meet the needs of individuals.
I admire Dr. Nishikawa for the breadth and interest of the issues he raised in his talk. He had only a short while to prepare since the scheduled speaker was unable to attend the conference due to last minute transportation difficulties.
The talks were followed by a question and answer session with the audience. The issues ranged from how to lower the rate of catheter infections to how to avoid clotting a catheter off; and from “What’s the best Drano for enteral tubes?” to questions about Dr. Wilmore’s bowel enhancement work. To get the inside scoop on these issues, be sure to borrow a videotape of the session from the Oley library. Call (800) 776-OLEY for a videotape library order form.
2/6/2017 » 2/10/2017
Feeding Tube Awareness Week
2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week