1. What is Patient-Centered Care?
Patient-centered care is defined as active patient engagement at every level of care. The Institute of Medicine (IOM) describes patient-centered care as health care that establishes a partnership among practitioners, patients, and their families to ensure that decisions respect patients’ wants, needs, and preferences and patients have the education and support they need to make decisions and participate in their own care.
In a 2001 landmark article co-authored by Dr. Berwick, the former administrator of the Centers for Medicare and Medicaid Services, Healthcare in a Land Called PeoplePower, patient-centered care and the rights to autonomy and self-determination were raised to a new level by a single phrase, “Nothing about me without me“. Under this people powered healthcare model, “infomedicine” will replace the current “biomedicine”. Primary care clinicians will serve as “gateopeners” instead of “gatekeepers”, so that patients will be full partners with health professionals in informed, shared decision-making and have governance of their own care. They will not only have nearly complete access to their medical record, they also write in it, elaborating, tracking, and correcting mistakes and at times suggesting diagnoses and treatment plans.
This guiding principle of patient-centered care has brought a breath of fresh air to the landscape of traditional medicine. Only a few years ago, patient-centered care was commonly viewed as radical and dismissed by medical professions including some government agencies. For decades, the healthcare model has been built on “disease-centered care”, where patients were treated as passive objects at the receiving end of the medical care and what they wanted for their own care was irrelevant. The clinicians’ opinions were often viewed as authoritarian, unquestionable, and superior to those of patients. As a result, doctors made almost all treatment decisions for patients.
In recent years, patient-centered care has been increasing embraced by mainstream medicine at the demand of the public. More evidence shows that patient-centered care is a core foundation for quality of care and patient safety as recognized by the IOM. In its 2001 report, Crossing the Quality Chasm, the IOM describes patient-centered care as respectful and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.
Here are the core concepts of a patient-centered care model:
- Dignity and Respect. Health care practitioners need to listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds need to be incorporated into the planning and delivery of care.
- Information Sharing. Health care practitioners need to communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families need to receive timely, complete, and accurate information in order to effectively participate in care and decision-making.
- Participation. Patients and families should be invited, encouraged, and supported in participating in care and decision-making at the level they choose.
- Collaboration. Health care leaders need to collaborate with patients and families in policy and program development, implementation, and evaluation; in health care facility design; and in professional education, as well as in the delivery of care.
2. Where We Stand on Patient-Center Care?
Washington Advocates for Patient Safety (WAPS) strongly support efforts and policies that promote patient-centered care, informed consent, and shared-decision making because we believe:
- Patient-centered care and share-decision making will improve the quality of care and reduce medical errors and harm;
- Patient-centered care and shared-decision making need to be the standard for the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among patients, families, and healthcare providers;
- Patient-centered care and shared-decision making should apply to all patients regardless their ages, medical conditions, and health care setting;
- Patients should be guaranteed a greater access to medical information, in particular treatment risks vs. benefits including the option of no treatment, as well as a greater role in their healthcare decision-making.
In our own efforts, we will take every opportunity to educate the public, government agencies, and lawmakers about patients’ perspectives on why patient-centered care, informed consent, and patient-and-family-shared decision making are important to us, patients and their families. Currently, we are developing collaboration with the School of Nursing and the Center for Health Sciences Interprofessional Education, Research and Practice at the University of Washington. The collaboration is an effort to train a new generation of medical professions who will be more aware of and compassionate about patient-centered care through interprofessional team-based efforts. On June 4th, 2013, Yanling Yu and Rex Johnson of WAPS participated in a class seminar with UW medical students to provide first hand interaction with people who have experienced medical errors. This was a very positive experience for everyone and we who to continue this outreach. Here is a UW newsletter on this event. See article 5 and 9 (Look for photos of Yanling Yu).
3. Patients’ Rights
Patient rights form the foundation for patient-centered care. In the United States, a number of fundamental patient rights are protected by state and federal laws: such as the right to get a copy of your medical records, the right to keep them private, the rights to be informed about your own medical conditions and treatment risks, and the right to refuse treatments. Among all, informed consent is the cornerstone of patients’ rights. Under informed consent, a patient can consent to a surgical or medical procedure or other course of treatment, after the health care provider has informed the patient about the potential benefits, risks, and alternatives involved. The informed consent is based on the principle that a health care provider has a duty to disclose information that will enable the patient to make an informed decision regarding his or her own treatment. Therefore, consent must be informed to be valid, i.e., the information must be understandable by the patient and must not be misleading.
The following describes some well recognized patients’ rights:
a) The Right to Be Treated with Respect
All patients, regardless of their means or health challenges, should expect to be treated respectfully and without discrimination by their providers, practitioners and payers.
b) The Right to Obtain Your Medical Records
The HIPAA Act of 1996 provides patients in the United States a right to obtain their medical records, including doctors’ notes, medical test results and other documentation related to their care. Patients also have the right to request corrections and amendments to their medical records.
c) The Right to Privacy of Your Medical Records
The HIPAA Act also outlines who else, besides the patient, may access the medical records.
d) The Right to Make a Treatment Choice
A patient has the right to know all risks, benefits, and treatment alternative before consenting to any treatment. The patient also has the right to refuse any treatment.
e) The Right to Informed Consent
A practitioner or facility that performs tests, procedures or treatments must ask the patient to sign an informed consent form. Prior to the patient’s agreement to treatment, the practitioner is expected to provide clear explanations of the risks and benefits
f) The Right to make Decisions about End-of-Life Care
Patients have the rights to make decisions on how their lives will end, including life-preserving measures such as the use of feeding tubes or invasive mechanical ventilators.
4. Patient-centered care from “confessions of an extremist”
Dr. Don Berwick, the former administrator of the Centers for Medicare and Medicaid Services, gave an inspiring lecture on what patient-centered care should mean. During his speech, Dr. Berwick proposed that the patient should truly be at the center of the health care system:
“For better or worse, I have come to believe that we — patients, families, clinicians, and the health care system as a whole — would all be far better off if we professionals recalibrated our work such that we behaved with patients and families not as hosts in the care system, but as guests in their lives. I suggest that we should without equivocation make patient-centeredness a primary quality dimension all its own, even when it does not contribute to the technical safety and effectiveness of care.”
We strongly support Dr. Berwick’s view on patient-centered care.
5. The slow progress of patient-centered care
While it is a no brainier as to why we need patient-centered care, the concept is not welcomed by everyone, in particular by some “traditionalists” in health care. Here is an excerpt from an article, “How Patient-Centered Health Care Can Improve Quality”, by Dr. Carolyn Clancy, former director of the Agency for Healthcare Research and Quality (AHRQ):
“We have a long way to go in offering patient-centered care. The Commonwealth Fund recently surveyed physicians nationally, examining practices that are commonly accepted as patient-centered, and arrived at some disturbing conclusions about the low frequency of patient-centered practices (Audet, 2006):
- Only about one-half (54%) of all physicians send reminder notices for preventive or follow-up care.
- Just over one-third (36%) of primary care physicians (PCPs) conduct patient surveys and use the data to improve their practice.
- Only 26% of PCPs have medical records and lab tests readily available.
- Less than a quarter (23%) of PCPs have electronic medical records.
- Barely one in five (21%) of PCPs “always or often” furnish patients with information on the quality of care of referral physicians.
- Only 18% of all physicians give patients the opportunity to ask questions and transmit information through e-mail.
Individually, each of these statistics would be startling. Taken together, they paint a clear picture of a healthcare system that does a poor job of placing the patient at the center of their own care. This must change. We must recognize that patients are the best source of information about their own bodies and about how they prefer to be treated. They should always have the final word in decisions about their treatment.
6. What do patients want for shared-decision making?
Here are some telling statistics based on a survey of 1,068 patients conducted by ConsumerReportsNationalResearchCenter:
First and foremost, patients want more meaningful discussions with their care provider when making health care decisions. The survey found that just 6 in 10 strongly agreed that their provider listened to them, and less than half strongly agreed their provider took the time to understand their goals and concerns. Fewer than 4 in 10 said their provider clearly explained the latest medical evidence.
The survey also found that eight in 10 people strongly agreed that their provider should tell them the full truth about their diagnosis, no matter how unpleasant. Two-thirds strongly agreed their providers should tell them the risks of the treatment options and 65 percent wanted to hear about each option’s potential impact on the quality of life. Almost half said that they want their provider to discuss the option of NOT pursuing a test or treatment, and an additional 41 percent said they “somewhat agreed” with this statement.
However, this is not what is happening. Only 4 in 10 strongly agreed that their provider clearly explained the latest medical evidence or that their provider explained the option of doing nothing.
These statistics clearly demonstrate that patients view informed consent and shared-decision making as critical components in the quality of their medical care. However, the medical system still has a long way to go to treat patients as the center of the team and that patients need to be listened to, respected, and their concerns need to be addressed in a timely fashion.
7. More readings on Patient-centered care and shared-decision making
The Empowered patient Decision Support App
Take in charge of your own care – freeonline patient safety courses offered by the Empowered Patient
Guide to improving patient-centered care. READ MORE
It is your health, you call the shots. Receiving Patient-centered care
