Person Centered Model of Care

How can we ensure the well-being of our loved ones at any age and with any illness – but especially those in professional care settings? The key words are “Avoid”, “Prevent” and “Lessen” risk factors, including isolation and loneliness, that lead to negative outcomes. Remember, physical outcomes impact on emotional outcomes and emotional outcomes impact on physical outcomes.*

See also Isolation: Caring for the Elderly and Disabled

See also: Communication is Key

Learn more as you read below.

Placing someone in a professional care setting, be it a day program, short term or long-term care facility or hospital can be stressful for all involved but most importantly for the person medically diagnosed with a medical and/or a behavioral health disability whereby the patient’s or resident’s autonomy may be at stake.

Care Model of the Past – We know what you want and what you need model

In the past, care was provided within in a “paternal” or “surrogate” context meaning patient or resident autonomy was often overridden by family members, para-professionals, medical personnel or facilities in models of care disregarding the needs, values and most importantly the voice of the patient.

Care Model of the Past – Social Isolation

In the past, medical and behavioral health services were often provided in the context of a social isolation model, at home or in a facility, believing those affected, of any age, with a disability had little if anything to contribute to the quality of their own care or to their families and community.  Isolation in a care-giving setting was often defended as a administration or management decision, behavior modification technique or considered medically necessary.

Isolation was often the answer to addressing the stigma associated with physical or behavioral disabilities.

The Negative Impact of the Social Isolation Model and Paternal/Surrogate Care Models

In the last 20 years or more, evidence-based studies of the “paternal” or “surrogate” care models, which disregarded the voice of the patient or resident and imposed various forms of social isolation, found such care models produced negative outcomes impacting on the quality of the life including unwillingness to comply with care, increased hopelessness, excessive costs to the health care system and ultimately impacting on mortality.

Today’s Care Models – Promoting Justice and a Voice for Hope and Opportunity

As a result of evidence-based knowledge, there is a culture shift across the entire spectrum of international medical and behavioral health care from a voiceless, isolation model to a person-centered thinking/family centered “active” life model valuing the individual’s right to have voice in his or her care and to be active part of family and community.

Today, active inclusion of all people in their medical and behavioral health decisions is considered a human right and ethical standard.

Today, justice in medicine and access to care are recognized as civil liberties and the rights to be afforded all.

Today, the standards of care for home care, short-term and long-term care facilities are redesigned as places that value the “person-centered” thinking model where the resident or patient has self-control and self direction in their care in order to lead a life of dignity and fulfillment. Care providers, both family and professionals, play an integral role in ensuring safety, ensuring residents and patients have a voice in their care,  as well as ensuring the highest medical and ethical standards are met.

Today, persons with disabilities have a voice in their care and the fullest opportunities to remain connected to family and friends.

Today, persons with disabilities have a voice in ensuring they have opportunities to play a vital role in our community.

 What to look for in Facility Care and Facility Care Professionals

  1. Look for a facility licensed by the RI Department of Health and is nationally accredited. Check with the Department of Health  to determine the facilities licensure status, any inspection findings as well as national accreditation standing. Also, check the website of the accreditation organization to see if still in compliance. Two national accreditation associations are: Joint Commission and CARF.

Note: Facilities accepting Medicare and Medicaid patients meet not only meet state licensing requirements but also national accreditation and federal Medicare standards. To check a facilities status and Medicare rating visit state and Medicare websites.

Note: In Rhode Island,  RI licensed facilities that are private pay, and  NOT accepting Medicare or Medicaid may or may not by state or federal law have to meet all of the standards of licensure and Medicare required of those who DO accept such payments and accordingly, if not accredited may or may not have the same level of outside oversight and peer review.  While state law may not require accreditation, licensed facilities may voluntarily choose accreditation.

  1. Look for a facility that provides a Resident Handbook explaining all patient or resident care policies and procedures. The handbook should include policies regarding the circumstances and use of emergency room services and visitor policies/restrictions and coordination of medical care.
  2. Ask for samples of all forms that will be provided to physicians and medical care facilities.
  3. Carefully read all handbooks and contracts to understand the conditions under which your love one will receive medical and personal care individualized to your loved ones needs.
  4. Look for a facility that can provide and demonstrate the implementation of a Patient or Resident Bill of Rights which places emphasis on the four commonly accepted standards of health care ethics:
  • Principle of respect for autonomy

(Patients voices are heard, respected, and honored through implementation and practice.)

  • Principle of non-maleficence

(All decisions regarding patient care are made with the goal of first and foremost “doing no harm” to the patient physically or emotionally).

  • Principle of beneficence

(All medical and behavioral health decisions should promote “good”.)

  • Principle of justice

(Care decisions should promote fairness, equality and access to beneficial care.)

Note: The four commonly accepted health care ethics principles listed above provide guidance in developing programs and policies aimed at ensuring wellness and preventing any and all forms of emotional and physical abuse. No abuse or injury is acceptable in a facility care setting and should be thoroughly evaluated, treated and investigated.  After care should include evaluation and guidance by a primary care doctor. Any report of medical or physical observations or abuse should not result in a suggested care model of isolation from family and friends.

Care Models Never Replace Family for Facility

Care models should never supplant family for facility. Look for a facility actively demonstrating it does not recommend or implement social isolation as a care model at any time during the continuum of care including daily life as well as admission/readmission/transition from home to facility or from hospital to facility.

Social isolation is not a medical care model in hospitals and should never be a care model in any other type of other facility setting. Around the clock, 24/7 access to family members ensures observation of quality of care, facility practices as well as patient physical and emotional health and safety.

Isolating Patients for Emergency Purposes – Informing Family and All Care Providers

If the doctor, nurse, program staff or administrator of a facility implements a social isolation care model, as medically necessary for emergency purposes, because a resident is a danger to themselves, the community or unable to care for themselves, all of the patient’s family and care providers should be made aware of this care model and review this care model with primary care doctors, specialists and any emergency care personnel such as rescue and hospital emergency rooms.  Resident or patient handbooks should have written policies and professional standards as to how such emergencies will be handled.

Ongoing Review of Care Plans by Primary Care and Specialists

Social isolation has serious health implications impacting on all facets of the patient or resident’s care. Accordingly, just as you would ask any health care provider to share their medical findings with your primary care or other specialty care providers, to ensure continuity of care, any care plan suggesting or mandating denial of access to the resident or patient, by family and friends as a care policy, should be coordinated, reviewed, vetted and signed off by the patient’s primary care doctor, specialists as well as the resident’s medical and behavioral health providers.  If you believe a facility’s policies or care plan recommendations are not in keeping with the best interests of the patient or reflect the patient’s desires, values and care goals,  consider a review by the state ombudsman for long term care.

Befriending the resident or patient can also keep family informed of how care is implemented. Learn how to listen. Be observant of physical and emotional changes. Be watchful of the resident or patient who says everything is ok. Be watchful of the resident or patient who does not talk at all.

Disagreements Regarding Care and Access to Residents (Elder and Disability Care)

Ask for advice from the RI Department of Health Facility Regulation.

Ask for advice from the RI Department of Elderly Affairs.

Ask for advice from the RI BHDD – Office of Quality Assurance

If family members or others are in disagreement regarding social isolation/access to a patient or any part of the residents medical and/or behavioral well-being, facilities should demonstrate a written policy of actively outreaching to and engaging the services of an state ombudsman from the RI Alliance of Long Term Care to serve as mediator and ensure the patient or resident’s voice is heard, honored and the patient is safe.  Each facility must have posted in a prominent place, the office of the ombudsman “Patient Rights”.

Coordination of Care – Medical Justice is a Two-Way Street

When a resident in a short or long-term care facility is scheduled for a doctor’s appointment, the facility provides  RI Department of Health Continuity of Care forms for the health care provider to complete. At the same time, the facility should provide the doctor with the patient’s complete care log as well as care plans recommended by the facility and signed off by the family. All medical and behavioral incidences should be included. Providing a complete care log ensures all care providers have access to the same information and can make informed medical and behavioral health decisions that are in the patient’s best interest and meet the four principals of health care ethics listed above.

 Related Web Links:

US Department of Disability Services – Person-Centered Thinking

RI Department of Behavioral Healthcare, Developmental Disabilities and Hospitals

Alliance for Better Long Term CareRI State Long Term Care Ombudsman Program

RI Department of Elderly AffairsAdult Protective Services

RI Department of Health – Center for Health Facility Regulations

U.S. Center for Disease Control – Understanding Elder Abuse Fact Sheet.

American Bar Association Commission on Law and Aging/US Bureau of Justice AssistanceLaw Enforcement Guide to Elder Abuse

Stanford University School of MedicineSuspected elder and dependent adult abuse

Nursing Home Abuse GuideEffects of Emotional Abuse

Global Journal of Nursing and Forensic Studies – Screening and Interventions for Elderly Abuse

U.S. Agency for Healthcare Research and QualityWelcome Policy Eliminates Visitor Restrictions

U.S. Office of the Assistant Secretary of HealthPerson and Family Centered Care

American Medical Association Journal of EthicsTranscending the Tragedy Discourse of Dementia: An Ethical Imperative for Promoting Selfhood, Meaningful Relationships, and Well-Being”

McMaster UniversityLoneliness and social isolation are important health risks in the elderly.

AARPFramework for Isolation in Adults over 50

 Additional information can be found on the following links:

The World Health Organization

Centers for Disease Control and Prevention

American Board of Internal Medicine – Choosing Wisely an initiative of the ABIM Foundation

National Institute on Aging

National Institutes of Health

American Medical Association

American Psychiatric Association

American Psychological Association

 Note: This information should not be used to determine medical or behavioral health treatment.  Every person is unique. We encourage you to use this information as the gateway/starting point to a conversation with your primary care doctor or specialist to determine an individual’s best care and treatment plan.