Patient centered care- what is it all about?
Take Charge of your Care
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Patient centered care is a philosophy of care that puts you- the patient- in the center of your care. This care is especially suited to the long-term care needs of people living with PD. This philosophy of care is more than just treating a disease, illness or symptom; it is a model of care focused around understanding the needs and expectations you have for your healthcare and wellbeing. Care is improved through active participation, increasing your sense of control and independence that is so important for persons with Parkinson’s disease. To be an active member of the team, it first helps to understand the important features of patient centered care. From this knowledge, you can plan your role in care and participate in your care goals and treatment steps.
By definition, patient centered care may be different for each individual which mirrors the differences we find with our patients. Personalized care starts with identifying and understanding your expectations and preferences which may be related to your life experiences, unique personality, culture, ethnic, and educational background. The following section breaks down patient centered care into three main categories; individualized care, relationships in care, and active participation.
Individualized Value Driven Care
Each person has a unique set of strengths, goals, dreams, relationships, and preferences. The first step is to identify your own needs, preferences or goals and define concepts that are important for your medical team to understand. Are you ready to take the steps towards reaching your goals? Is there something that you value in life that needs more focus and attention? For example, an artist may wish to continue painting. In this situation, therapy could use art to help with motor control rather than focusing only on tremor or arm stiffness.
Identify relationships important to your care
Relationships with family and friends may be an important part of your life and could include your community, workplace, church or other social groups. A treatment is more likely to be successful if it includes things or people that you feel are important
Active participation in your care
Patient-centered care gives you the tools and support to take an active role in your overall wellbeing. This includes setting your goals for care, modifying them if needed, and working with your provider to take the steps needed to reach your goals. For treatment plans to work, you need to understand why a certain treatment is recommended and you should state whether you can follow through.
Helpful steps to improve your own care.
Be clear about your expectations for each clinic visit.
- Bring a list of questions.
- List your goal(s) for each appointment. This helps focus the appointment on you not your disease. Use The Goal summary Sheet found on this website.
- Talk about your goals. Ask if treatment exists and what steps you need to take to help you reach your goal.
- Understand why certain treatments are recommended. For instance, ask why you are taking each medicine. If your therapist recommends certain exercises, ask what are they designed to help or prevent. The comprehensive care worksheet lists the major rehabilitation therapies and their role in treatment for Parkinson’s.
- Be honest. Let your provider know if you do not think a treatment will work or do not think you can comply with a treatment.
- Work with your provider to chose the best time to return for follow-up visits. For example, let them know if you need to be seen more frequently because of your concerns or fears.
Be an active participant in your visit
- Be prepared for your visits.
- Ask your clinician “what information do you need from me to help us work as a team in my care?”
- Organize a “Carebook” and bring it to each clinic visit including contact information for your doctors and pharmacy. See My Medical Chart for a list of forms to print.
- Keep a list of your current and past medicines, doses, and timing. If you stopped a medicine, be sure to keep track of both the dose and reason for stopping. Medication forms for your use are available.
- Take the time to accurately fill out any questionnaires your providers give you. This gives you an opportunity to write down information you feel important for your provider to understand.
- Be sure you leave with an understanding about your treatment. Ask for a written copy of each treatment recommendation and why it is recommended.
- Ask your doctor to write why you are taking a medicine on each prescription so that it is clearly stated on the bottle, ie. Sertraline 100mg daily for depression.
- Consider including your family or friends in your healthcare visits.
Continue self care between appointments
- Share your list of medicines, side effects, and why you are taking them with your carepartner
- Keep a log or notebook of each treatment and its effectiveness (see above).
- Stay connected. Search for groups or activities to help you stay well
- Emotional health- support groups, meditation, guided imagery, counseling
- Physical- exercise, yoga, tai chi, dance class
- Cognitive health- creative activities and classes such as art, music, crafts, volunteer, bridge
Stay safe and reduce medicine errors
- Due this by updating your list of medicines between appointments.
- Change your medicines only under the supervision of your clinician
- Tell your team if you are not taking medicines as prescribed, unable or unwilling to take your medicines. If a walker is recommended for safe walking, give it a try! Be honest with your therapist if you will not. More information is available in Reduce your medicine errors. Pay attention to your general health.
- See your primary doctor for yearly check ups, preventative care.
- Ask your doctor about skin checks, bone health, and nutrition.
- Seek help for weight management, smoking and alcohol use if needed.
Author: Monique Giroux, MD
Copyright 2011 Northwest Parkinson's Foundation Wellness Center