Financial Concerns:
• Hospital bills
• Disability or retirement pays them less than work did
• Buy special foods
• Costly drugs
• Transportation
Travel:
• Dialysis away from home
• Not all centers have room or staff to care for visiting patients
Some insurer wont pay for out-of-network
Body Image / Sexuality:
• Patients feel their vascular access or PD catheters are ugly, or may worry about loss of muscle mass, scars, and hair loss (usually temporary if caused by dialysis)
• Patients may report problems with sexual function due to their illness or drugs they take, and this is a vital issue for them.
• About half of babies born to women on dialysis survive.
• Baby survival is better with more intensive dialysis (e.g., daily or nocturnal treatment.
Pain:
• Pain can result from surgeries, cramping, needle sticks, neuropathy and bone disease.
• 60% of dialysis patients had chronic pain; 66% take pain pills
Life Changes:
• Having to limit food and fluids and learn new ways to eat and cook is a huge day-to-day-burden.
• Patients may react to the changes in their lives by withdrawing; missing treatments; leaving early; or acting hostile, very dependent, or demanding.
• Beneath these behaviors is a grieving process for the loss of the way things used to be. Keep this in mind when you work with patients who may be rude or mean to you.
• Members of the care team must understand that anger, depression, and/or denial are normal reactions to a chronic illness such as CKD.
• You can play a pivotal role in helping patients adjust by talking to them and referring them to the social worker, who is specially trained to help people cope with their feelings and behaviors, and to help ease grief.
Communication:
• The way you interact with your patients is very important in their care.
• Everything you do and say, along with your body language, are part of the care you provide and the messages you give patients.
• Keep good communication in mind at all times.
Patient Confidentiality
• Patients need to feel safe in the center, and this extends to keeping their confidences in the team and in the treatment setting.
• Patients need to feel that all their information is taken seriously and not shared inappropriately with others.
• You should never discuss a patient's condition when anyone can overhear.
• THE MAIN RULE OF PATlENT/CAREGiVER INTERACTION IS CONFIDENTIALITY.
• HIPAA or Health Insurance Portability and Accountability Act
• Became law in 1996
• Created national rules about the security and privacy of health data, that took effect in 2003.
Active Listening
• Active listening is a skill used to give patients undivided attention and to be sure you understand them.
• Some things you can do to be a good, active listener are:
• Talk very little
• Use short, open-ended questions to draw out what the patient means
• Make eye contact
• Focus on the words and the non-verbal clues, asking questions like:
• Can you describe the pain in your feet?
• Do I understand you to mean that you..?
• Can you tell me more about what you ate yesterday
• Watch body language, facial expressions, and tone of voice. Caregivers use these clues to help patients share their feelings and to find more information.
• Open ended questions followed by silence can help patients tell you what is really going o
• Don't ask "yes-no" questions.
• Is a skill that takes time to learn.
• One sign that you are not doing active listening is that you find yourself preoccupied with what you want to tell the patient, rather than listening to what he or she is telling you.
• You can be a good listener by paying close attention and learning to draw patients put.
Boundaries
• Psychological boundaries are the rules people use to create appropriate relationship with each other.
• In the healthcare setting, good boundaries are vital to good communication.
• It is also not appropriate to see your patients on a social basis outside the center.
• It is not appropriate to give gifts to or accept gifts from patients, or to buy things for or sell things (e.g., candy) to patients.
• Focus all talks on the patient, not your own life. This is one way to keep talks professional.
• Keep in mind that anger - though it seems to be aimed at you - is most often about other things in their lives.
• Don't show anger yourself.
• As a caregiver, always act in a calm, professional, accepting way.
• Don't argue with a patient.
• Treat your patients and fellow staff as you would like to be treated.
• You must have a thorough knowledge of CKD and its treatments.
• Patients will ask you questions.
• Be sure not to give answers or advice that are beyond your scope of practice.
• If you don't know the answer, refer the patient to the right member of the care team.
Patient Education
Key points about how adults learn;
READINESS
• Adult learn only when they are ready.
• Pain and fear can make it impossible to learn.
• Wait for sign of readiness, such as when a patient asks questions or shows less fear,
• It is vita) to repeat information as patients become more ready to learn over time.
NEED
• Adults learn only what they feel they need to know -what is relevant to their lives
APPROPRIATE LEVEL
• All learning must be tailored to the learner.
• The only way for staff to know patient's educational background is to ask them - never assume.
• It includes the patient's ability to see, read, hear, and understand the language.
REINFORCEMENT
• It is not enough to teach something once - teaching must be repeated many times to be learned.
BELIEF
• People must believe that the concept the staff is trying to teach them is true, that it will benefit them, and that learning will have the desired effect on their lives.
In CKD, the goal of treatment is not cure - it is rehabilitation: living as normal a life as possible.
The purpose of dialysis is to let patients feel their best so they can keep doing things that mean something to them, like caring for children or grandkids, staying active in their towns or churches, golfing, playing music, or keeping a job.
Improving Patient Outcome
• Is the end result of the care we give
• Some of the outcomes we look at are:
• Morbidity - number and length of hospital stays
• Mortality-death
• Quality of life
• A working vascular access
• Life Options Rehabilitation Program
• Formed in 1993 with an unrestricted educational grant from Amgen Inc.
• To look at how to improve outcomes in people with kidney disease.
• In it you can see that the care you and your teammates deliver is vital.
• The patient has a key role: Self-management
• Self-management means that patients learn to become their own experts who can:
• Follow their treatment plans - working with their care team
• Keep themselves safe - by knowing how the treatment should be done
• Recognize and report symptoms - to avoid serious problems
• It is self-management that makes rehabilitation possible.
Patient Self-Management
• In the center, it is vital to help patients become their own experts and feel more in control.
• The center can urge patients to do as much as they can, for example:
• Tracking their blood test results
• Choosing the right foods
• Learning to put in their own needles
• Weighing themselves and writing down the number
• Calculating how much fluid to remove al each treatment Checking their dialyzer with a staff member
• Checking their machine settings and dialysate
• Telling the staff about any symptoms they are having
Importance of Hope
For patients to self-manage:
• They must first believe that they can have a good life on dialysis. Hope for a good life can motivate patients to learn.
• Patients must know that they need to take an active role in their care. This idea is new to many patients (and staff, too).
• All of these can be summed up in three words:
• Attitude - looking on the bright side, being grateful to be alive.
• Answers - learning what they need to know to care for themselves.
• Action ~ staying involved in the world and keeping physically fit.
Attitude
Several ways to give patients hope
• Have a positive attitude yourself.
• Expect patients to keep up with their favorite activities
• Share success stories
• Ask patients to help with their treatments
• Talk to patients and find out what they value most
• Act as a "holder of hope"
Answer
“Knowledge reduces fear and improves coping skills”
Several ways to help patient learn
• Talk about what you're doing as you do it.
• Be "askable"
• Ask patient's simple "quiz" questions
• Report patient questions or misconceptions
Action
• Staying alive in life includes things like keeping a job, volunteering, or exercise.
• Work is a source of income, health insurance, identity, and self esteem.
Keeping a job
• Helping patients keep their jobs is much easier than helping them find new ones.
Staying-fit
• Research shows that people on dialysis who say they have good physical functioning live longer than patients who don't.
• Exercise for people on dialysis may be, literally, a matter of life and death.
• The greatest barrier to exercise is a patient's lack of motivation.
Staying fit
You can help patient stay active in life by doing the following:
1. Suggest that patients with employment concerns talk with the social worker.
2. Work with the nurse and other team members to help patients understand their disease and its treatment
3. Talk to patients about what they enjoy doing.
4. Talk with retired patients to help them plan activities they will enjoy.
5. Share success stories.
6. Ask patients what they do for regular exercise.
7. Urge patients to take part in your center's exercise program, if you have one.
8. Allow patients to do as much as they can, physically.
Patient Resources
AAKP - American Association of Kidney Patients
ADA - American Diabetes Association
AKF - American Kidney Fund
DFC - Dialysis Facility Compare
End-Stage Renal disease networks
Home Dialysis Central™
Kidney School™
Life Options Rehabilitation Program
NKF - National Kidney Foundation
PKD Foundation
RSN - Renal Support Network
Conclusion
• A team approach to care that involves the patient, doctor, nurse, dietitian, social worker, and technician can give people with kidney failure the best possible care.
• With good care, patients can live long and live well on dialysis.
• You have chosen a demanding but rewarding career. Your contribution to the care of your patients can make a difference in their lives.
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