Tuesday, August 16, 2005

PATIENT-CENTERED HEALTH CARE; 21st CENTURY MEDICINE Part #3 (of 3 Parts) Health Care Team's and Patients' NEW Roles and Responsibilities

PATIENT-CENTERED HEALTH CARE; 21ST CENTURY MEDICINE Part #3 (of 3 Parts) Health Care Team’s and Patients’ NEW Roles and Responsibilities

This is probably the longest set of blogs that I will ever do, but I wanted to provide you with as much information on this critical subject as I could, in a timely, summary manner, so that you can read, bookmark, internalize, and become an Expert Patient, a Chronic Illness Self-Manager, and partner with your Health Care Team in a Patient-Centered Health Care system!

Through my process of applying for, qualifying for, and getting Long Term Disability (LTD) and Social Security Disability Insurance (SSDI), I have become and Expert Patient; a Chronic Illness Self-Manager, and have succeeded in partnering with my health care team in a Patient-Centered Health Care system. AND, I did it all without knowing what it was, and how to do it! All I knew, instinctively, was that I had to evolve into these types of Patient, and I had to set up this working relationship with my health care providers, to achieve my goals (essentially, the “WHY”)!

So, after I qualified for LTD and SSDI I set up the
www.disabilitykey.com website, and authored the Disabilitykey Workbook so that others could achieve the same disability financial benefit successes that I had achieved. THEN, when I had the good fortune to partner with my business partners who knew about the Internet and things like “blogs”, I began this blog on the www.disabilitykey.com website.

Believe it or not, it has taken me over 40 hours of work to locate the websites necessary to construct this 3 Part Series in this blog; I have researched literally hundreds of websites, and have culled as much of the salient information that I could, and rearranged it into what I hope is a logical fashion to assist you in your individual transitions.

So, in Parts #1 and #2 we have set the stage for WHY we need Patient-Centered Health Care in the United States, and WHAT Patient-Centered Health Care is. In this blog, we’ll investigate what a Patient-Centered Health Care facility looks like; what a Patient-Centered Doctor’s roles and responsibilities are; and, what a Patient-Centered, Chronic Illness Self-Manager’s roles and responsibilities are.

We’ll finish this blog with a series of questions that you can print out and take with you to conduct your own evaluation of your Health Care Team’s progress along this transition.


Research clearly documents that patients do want patient-centered health care which:
1) 'explores the patient's main reason for the visit, [their] concerns and need for information;
2) seeks an integrated understanding of the patient's world - that is, their whole person, emotional needs and life issues;
3) finds common ground on what the problem is and mutually agrees on the management thereof;
4) enhances prevention and health promotion; and,
5) enhances the continuing relationship between the patient and doctor.'

So, we have agreed that we want this shift/transition to occur. How do we do it? Again, start with the end goals/results in mind, then develop a plan with your health care team to transition to the new Patient-Centered Health Care model.


The Doctor-Patient “contract” in a traditional “doctor/illness-centered” model, from the patient’s point of view:
- Modern medicine can do remarkable things: it can solve many of my problems
- You, the doctor, can see inside me and know what's wrong
- You know everything it's necessary to know
- You can solve my problems, even my social problems
- So we give you high status and a good salary

The Doctor-Patient “contract” in a traditional “doctor/illness-centered” model, from the doctor’s point of view:
- Modern medicine has limited powers
- We can't begin to solve all problems, especially social ones
- I don't know everything, but I do know how difficult many things are
- The balance between doing good and harm is very fine

The new patient-centered health care model contract.
Both patients and doctors know that:
- Death, sickness and pain are a part of life
- Medicine has limited powers, particularly to solve social problems
- Doctors don't know everything: they need decision-making and psychological support
- We're in this together
- Patients can't leave problems to doctors alone
- Doctors should be open about their limitations


Essentially, in collaborative self-management, your role is to say to your patient, "Here's the information I have about (your illness). How can I help you apply this information to your life so that you can manage your disease effectively?" Instead of feeling responsible for patients who have a chronic illness, think of your role as being responsible to your patients—to inform, advise and support them. After all, it's not realistic to think that you can make decisions for your patients or force them to change their behavior. Only they can do these things.

Set the stage for your patients to manage their chronic illness effectively by helping them understand the following facts:

1) Their chronic illness is a serious illness. Patients who don't believe that their chronic illness is a problem will never be motivated to make changes to improve their health.
2) Their actions have consequences. Every decision your patients make—from what they eat to whether they take the elevator or the stairs—has an impact on their health.
3) There isn't one perfect way to treat their chronic illness. The treatment plan that's right for one patient who has their specific chronic illness may not be right for another. Explain all of the available treatment options to your patients so they can weigh the personal costs and benefits of each before committing to a treatment plan.
4) They can change their behavior. Some patients may think of change as an all-or-nothing proposition, or as an event, rather than a process. These mind-sets prime them for failure. Your patients will have a greater chance to succeed if you work together to make their treatment plan manageable by breaking it into incremental goals.

You, as the Expert Patient, Chronic Illness Self-Manager, can expect the following from your Physician in this new Patient-Centered Health Care model.

Your physician is an expert in his or her medical discipline. He or she will:
· Establish a diagnosis for the cause of your problem.
· Make treatment recommendations, explain why the recommendation is made, and explain the risks of any recommended treatment.
· Consider your wishes and preferences in your treatment plan.
· Provide skillful medical procedures.
· Provide support during your recovery. This includes nurses, and other office staff that participate in your care.
· Help you establish realistic expectation for your recovery.
· Ensure that you have actually heard what has been discussed.

In summary, how do clinicians help develop their patients into Effective Self-Managers?

Ø Respect the work done by persons with chronic conditions
Ø Acknowledge patients and families as team members and leaders
Ø Recognize the individual’s strengths and resources
Ø Structure a consultative relationship
Ø Focus on the goals of patients and families
Ø Adopt a health enhancement model of care
Ø Provide opportunity for training/education
Ø ALWAYS REMEMBER that the patient that you are currently seeing may be only one of many patients, but it this individual’s only life


The Patient’s Role:
Patient-centered” means that you take an active rather than a passive role in healing. That means you are willing to do as much work as necessary to facilitate your healing. This will include, but by no means will be limited to:
· Informing your-self about your condition and recommended treatments.
· Participating in decisions regarding your treatment.
· Enhancing the possibility for a successful outcome by following your doctor’s recommendations that can include difficult life-style changes such as stopping smoking, achieving and maintaining optimal weight, physical conditioning, and taking prescribed medications.
· Giving proper attention to other (secondary) health problems such as depression, anxiety, social isolation, etc.
· Reducing stress and depression that are commonly found in people who are living with your chronic illness.
· Maintaining a positive attitude.
· Developing reasonable expectations for recovery.
- Finding the right doctor.
- Communicating and mutual decision-making.
- Understanding and committing to the roles and responsibilities of the physician and patient in the new Patient-Centered health Care model.
- Problem solving and handling conflict.
- Resolving to asking questions about tests, drugs, treatment, surgery and any other advice from your health care team until you feel that you are clear about what is happening, and that you can comply.
- Researching medical literature and talking with your doctor about what you find.

Know how to tell your illness story. Many patients tend to start with a self-diagnosis, “I think I have bronchitis”, rather than plain facts, “I’ve been coughing for two weeks.” Brief, focused facts will usually get the doctor on the right track. It is also strongly recommended that you, the patient, bring in a clear written description of your symptoms to your doctor.
Use concrete examples to explain how the illness’ symptoms affect your daily life’s activities[1]. For example, “I’m getting worse” is less helpful than “We’ve buying milk in quarts because I can’t lift gallons anymore.” Everyday details also help the doctor understand how the medical data translates into real life.

As documented in the Disabilitykey Workbook, it is also a good idea to compile what I call a “Before and After” Matrix. This matrix describes your weekly activities BEFORE your illness’ symptoms greatly impaired your daily life’s activities; and, AFTER, as your life looks today. (Disabilitykey note: If you want to see my actual example of this matrix, write a comment to this blog, and I will post it in an adjunct blog.)
Learn about your illness so you can ask the right questions and help make decisions. Patients who take an active role in their care do better and earn more respect from the doctor. “An informed patient is always the best,” says Donald A.B. Lindberg, M.D., Director, National Library of Medicine, “even though that puts more pressure on us to keep up to date.”
Be willing to demonstrate the attitudes that you want from your doctor. For example, if you would like more give and take in the relationship, demonstrate your own flexibility by offering to negotiate and make concessions. “Patients can be a powerful agent for change of a physician’s behavior,” says William Godolphin, M.D., professor at the University of British Columbia and director of a physician-patient education program.

Accept realistic treatment goals. Many chronic diseases can be managed, but not cured. “In this age of hype, patients have come to expect the impossible,” says Lown. “Doctors frequently grope in the dark, not because they are delinquent in learning, but because the science is not there.”
Becoming an Effective Self-Manager
Ø Recognize your responsibility
Ø Get education and training on your particular chronic illness
Ø Set short and long term goals
Ø Recognize, document, and be able to clearly articulate your strengths and abilities
Ø Develop a support system
Ø Advocate for self and others
Ø Have a purpose
Ø Prepare for health visits, know what you want, get routine tests ahead of time so visit can devoted to discussing results
Ø Focus on key issues, write out questions in advance, needed refills
Ø Develop a team and a system for records– timeline, providers, symptoms, medications
Ø Teach your doctor about how to be a healer

The following section is directed at Patients and their Health Care Teams in evaluating their progress along the transition to a Patient-Centered Health Care system.

So How Does Your Practice Rate?
Answer these three questions to better understand where your team's practice falls on the spectrum of patient- rather than physician/illness- and/or staff-centered care:

Accessibility --When we consider schedule changes or process changes, do we first consider what the patient wishes and what the patient needs ... ... or do we consider what works best for us--the physicians and staff?

Interpersonal --Do I listen to the patient to understand the feelings, perspectives, and desires of the patient and involve him or her in treatment options ... ... or, since I am the trained expert and know what is best, do I tell the patient what to do?

Affordability and Quality- --Do I keep abreast of the quality and cost options of care to provide the patient with the most appropriate choices ... ... or do I simply go with the newest and/or the most expensive approach?

Although our first reaction is to consider patient-centered care only at the team/office or individual practitioner level, a comprehensive assessment must also include the overall organization in which the teams and practitioners operate.

Here's an interesting question for leaders of your medical group or health care organization to consider:

If the three questions listed above were asked of the patients of your organization, are you confident that they would conclude your organization truly puts the patient first?

The Specific Criteria for evaluating individuals and organizations for the Picker Institute Annual Awards for Health Care Teams who have transitioned to the Patient-Centered Health Care model are based upon the dimensions of care deemed important to the patient through “the patient’s eyes.”

Those dimensions are derived from two sources:

* the dimensions of patient-centered care outlined in the classic text, "Through the Patient’s Eyes", and
* the description of what patients should expect from their health care from The IOM Report, "Crossing the Quality Chasm, Simple Rules for the 21st Century Health Care System.”
THE DIMENSIONS OF PATIENT-CENTERED CARE (from: Through the Patient's Eyes)

- Access to Care
- Respect for Patient Values, Preferences, and Expressed Needs
- Coordination of Care
- Physical Comfort
- Emotional Support
- Involvement of Family and Friends
- Information, Communication and Education
- Transition and Continuity

Eight Dimensions of Patient-Centered Care
Patients indicate a need to be recognized and treated as individuals by hospital staff. They are concerned with their illnesses and conditions and want to be kept informed.
- An atmosphere respectful of the individual patient should focus on quality of life.
- Involve the patient in medical decisions.
- Provide the patient with dignity, and respect a patient’s autonomy.
Patients report feeling vulnerable and powerless in the face of illness. Proper coordination of care can ease those feelings. Patients identified three areas in which care coordination can reduce feelings of vulnerability:
- Coordination of clinical care;
- Coordination of ancillary and support services; and
- Coordination of “front-line” patient care.
Patients express a fear information is being withheld from them and staff is not being completely honest about their condition and prognosis. Based on patient interviews, hospitals can focus on three communication items to reduce these fears:
- Information on clinical status, progress and prognosis;
- Information on processes of care; and
- Information to facilitate autonomy, self care and health promotion.
The level of physical comfort patients report has a tremendous impact on their experience. Three areas were reported as particularly important to patients:
- Pain management;
- Assistance with activities and daily living needs; and
- Hospital surroundings and environment.
Fear and anxiety associated with illness can be as debilitating as the physical effects. Caregivers should pay particular attention to:
- Anxiety over physical status, treatment and prognosis;
- Anxiety over the impact of the illness on themselves and family; and
- Anxiety over the financial impact of illness.
Patients continually addressed the role of family and friends in the patient experience, and often expressed concern about the impact illness has on family and friends. Family dimensions of patient-centered care were identified as follows:
- Providing accommodations for family and friends;
- Involving family and close friends in decision making;
- Supporting family members as caregivers; and
- Recognizing the needs of family and friends.
Patients often express considerable anxiety about their ability to care for themselves after discharge. Meeting patient needs in this area requires staff to:
- Provide understandable, detailed information regarding medications, physical limitations, dietary needs, etc.;
- Coordinate and plan ongoing treatment and services after discharge; and,
- Provide information regarding access to clinical, social, physical and financial support on a continuing basis.
Patients need to know they can access care when it is needed. Focusing mainly on ambulatory care, the following areas were of importance to the patient:
- Access to the location of hospitals, clinics and physician offices;
- Availability of transportation;
- Ease of scheduling appointments;
- Availability of appointments when needed;
- Accessibility to specialists or specialty services when a referral is made; and
- Clear instructions provided on when and how to get referrals.

Living with Illness or Disability
- Follow-up care according to guidelines
- Patient experience regarding communication with clinician
- Frequency of routine checkups for illness progression
- Patient involvement in care
- Patient involvement in treatment decisions, including types of treatment.

(Disabilitykey Note: These questions form an amalgam, within each subset, from 4-6 different study questions. The questions chosen by Disabilitykey for this blog appear to cover the broadest range, thus, better for the patient to use when self-analyzing his/her own health care team.[2] )

Measure Category #1: Patient Centered Communication and Caring
Example Survey Items
Specific Measurement Concept: Communication with Health Care Providers

Response Options: Strongly Disagree to Strongly Agree (six point scale)

Thinking about the personal aspects of the care you receive from your regular doctor, how would you rate your doctor’s caring and concern for you in the following statements.

1. My doctor knows we well as a person.
2. My doctor understands what is important to me regarding my health.
3. My doctor always takes my beliefs and wishes into account in caring for me.
4. My doctor always explains things in a way the meets my needs.
5. I feel comfortable telling my doctor about my worries or problems.
6. My doctor understands how my family affects my health.
7. My doctor would meet with members of my family if I thought it would be helpful.
8. My doctor uses her/his knowledge of my community to take care of me.
9. Thinking about my doctor, I would recommend him/her to a friend who wanted someone with an excellent personal manner.
10. When discussing diagnosis and treatment related to my condition , my doctor asks if I would like to include family members in the discussion
11. I have time during my visit with my doctor to ask the questions I would like to ask.
12. I am clear about how to follow my doctor’s orders.
13. I feel satisfied with the way my doctor treats me as a person.
14. My doctor asks about the role of family in my health care.

FOR PEOPLE WITH A CHRONIC CONDITION (same response options as above)

Overall, the help that I have received from my health care team has been appropriate, helpful, useful, and timely, in the following areas:
a. Making clear the specific goals for treating my (condition).
c. Helping me understand what I need to do for my (condition).
d. Helping me understand how to care for myself and how to do it.
e. Keeping me motivated to do the things I need to do for my (condition).

There are many, many additional questions, but this gives you a taste of the type of questions that you, the Expert Patient, the Chronic Illness Self-Manager, the patient in partnership with your health care team in a Patient-Centered Health Care model, should be able to rank consistently as: STRONGLY AGREE!

Again, if you have any questions or comments, please ask them!

[1] Sounds familiar, doesn’t it! For those of you who have purchased the Disabilitykey Workbook, you will see that documenting your symptom impairments on your daily living activities is one the keys to becoming an Expert Patient; a Chronic Disease Self-Manager; and a Patient in partnership with his/her health care team in a Patient-Centered Health Care model.
[2] To see all the questions, refer to Attachment A; Example Measurement Tools for Creating Patient-Centered Care Quality Measures for a National Health Care Quality Report. This Attachment A is an attachment to the FACCT (The Foundation for Accountability) Patient-Centered Care Measures for the National Health Care Quality Report (Defining Patient-Centered Care); by Christina Bethell, PhD; FACCT; May 2000; Copyright © 2001 by The Foundation for Accountability


Blogger Scambuster said...

"I have researched literally hundreds of websites, and have culled as much of the salient information that I could, and rearranged it into what I hope is a logical fashion to assist you in your individual transitions."

What you call rearranging amounts to content theft that is actionable under the digital millenium copyright act. I have noted more than 20 instances of direct word-for-word copying that you have done from other websites. If I were you, I would cease this before you run into a problem with a notice of infringement.

10:12 PM  

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