Consumer Guide

NCCNHR National Citizens' Coalition for Nursing Home Reform A CONSUMER GUIDE TO CHOOSING A NURSING HOME

Consumer Fact Sheet No. 1                                            September 2005

(printable PDF version of this document)

The National Citizens' Coalition for Nursing Home Reform (NCCNHR) knows that placing a loved one in a nursing home is one of the most difficult tasks a family member ever faces. But when it becomes necessary, prospective residents and their families should have the best information possible to make this decision. There are many resources that can help. The purpose of this Consumer Guide is to help you navigate those resources, understand the information, and make an informed choice.   And once your loved one is in a home, NCCNHR can help you get good care there. Our website, http://nursinghomeaction.org, has more information.

First, Explore Alternatives

If at all possible, plan ahead for future long-term care needs. If an individual and those close to them can discuss preferences related to long-term care and plan ahead of time, decisions and arrangements are much easier when the need for long-term care arises.

Before you look for a nursing home, be sure your loved one’s condition and support system has been thoroughly evaluated. When properly diagnosed and treated, some conditions may improve significantly. Also, some people with serious medical conditions can remain at home with the proper support system. Talk with your loved one to find out about her/his wishes. Even if s/he has dementia and/or difficulty communicating, the prospective resident should be at the forefront of the decision making process as much as possible. Since most people prefer to stay in their own home, it is important to investigate alternatives to nursing home care (e.g. home care, day care, assisted living). Sources of information about available services are the Eldercare Locator, tel: 1-800-677-1116 or website: www.eldercare.gov and the National Aging Information Center website: www.aoa.gov/NAIC/Notes/caregiverresource.html. If nursing home care is needed, decide whether long-term care or short-stay rehabilitation is needed.

Do Your Homework

As you begin to evaluate facilities, it’s a good idea to do some preliminary research before you visit any nursing homes. Once you have gathered information, visits to the facilities you are considering will provide you with very important insights. (See “Visits to Nursing Homes” section, page 6.) Some issues to consider when evaluating facilities include quality of care and life, bed availability, provision of services that the resident will need, cost, and location in an area where friends and family of the resident can visit often. Ask nursing home residents, residents’ families, citizen advocacy groups, your physician, the hospital discharge planner and clergy members for their opinions about various facilities. This guide will highlight some important sources of information to use in your evaluation, including:

   Long Term Care Ombudsmen

    State or Local Level Citizen Advocacy Groups

   Cost Information

   'Nursing Home Compare' website

   State Nursing Home Inspection Reports

   Complaint Information

   Visits to Nursing Homes

Experts to Consult:
The Prospective Resident, Long Term Care Ombudsmen and Citizen Advocates

First, consult with experts. The best expert on what will be a good place to live is the prospective resident. Ask him or her about whether s/he wants to live near a particular family member or friend, in his or her hometown, if s/he prefers a large or small facility, etc. Then, a state or local ombudsman program and/or citizen advocacy group can assist you in piecing together the different sources of information to make an informed decision about nursing home care. An ombudsman is state or county government-funded advocate for residents of nursing homes, board and care homes, and assisted living facilities who will be familiar with the facilities in your area and often with the staff and residents who reside in them. Ombudsmen assist residents and others by:

   Educating consumers and long term care providers about residents' rights and good care practices

   Investigating complaints and advocating for residents' rights and quality care in long term care facilities

   Providing information to the public on long term care facilities and policy issues

S/he can help you find and interpret information from state inspection reports and the resident characteristics or quality measures that can be found on the Nursing Home Compare website: www.medicare.gov/NHCompare/home.asp. To find your Long-Term Care Ombudsman, go to the NCCNHR website at www.nursinghomeaction.org and click on the button labeled "Get Help" or call NCCNHR at 202-332-2275 for ombudsman contact information.

Also, many states and/or communities have active Citizen Advocacy Groups that are knowledgeable about nursing homes and can be very helpful in evaluating advice and information you receive. To find a local or state citizen advocacy group go to the NCCNHR website at www.nursinghomeaction.org and click on the button labeled "Citizen Groups" or call NCCNHR at 202-332-2275.

Cost Information

Most nursing homes participate in the Medicare and/or Medicaid programs, which reimburse them for part or all of the care that some residents receive. Medicare pays for post-hospital rehabilitation care and hospice care services for short periods of time. Medicaid pays for nursing home care for longer periods for those who are financially eligible.

Most nursing home residents, even if they pay privately when they enter a home, eventually run out of money because of the high costs. They then apply to have the cost of their care paid for by Medicaid. Unless you are certain the resident can pay indefinitely with private funds, choose a facility that accepts Medicaid payment. Find out what your state's Medicaid eligibility rules are. Note that spouses may keep some assets and have a regular income even if their partner is on Medicaid. For additional information about the rights of residents paying for care through Medicaid, contact the long-term care ombudsman program and/or a local consumer advocacy group.

'Nursing Home Compare' Website

Nursing home data is provided by the federal government through 'Nursing Home Compare': www.medicare.gov/NHCompare/home.asp. On this site, you can search for nursing homes by state, county, city, or zip code. Once you have selected the nursing facility or facilities, you are given the option of viewing several different types of information including facility inspection, staffing level, and quality measure information. Below are consumer tips on how – and how not – to use each of these sources of information.

Facility Overview

On ‘Nursing Home Compare’ the “About Homes” section gives an overview of basic characteristics of each facility. Data in this section includes the type of ownership (for-profit, non-profit, church-related, etc.), type of payment accepted (Medicare, Medicaid, or both), the size of the facility, and whether or not the facility is part of a chain. All of this information can be helpful in getting a preliminary picture of what the facility is like.

State Nursing Home Inspection Reports

‘Nursing Home Compare’ provides inspection reports for each facility. State inspection or “survey” reports contain information about any deficiencies found when inspectors complete their annual inspection of the facility. Inspections take place at least every 9 to 15 months. You can also obtain state inspection reports from the state survey agency, the facility itself, or the long-term care ombudsman. Each facility is required by law to make the latest state inspection report available for examination in a place readily accessible to residents. To look at a summary of state inspection information on ‘Nursing Home Compare’, click on the tab labeled "Inspections.”

Tips:

- Check the date of the report posted on the website to be sure that it is dated within the last 9-15 months. If the report is older than that, there has likely been a more recent survey. (The date of the inspection is listed right above the deficiency summary).

- View previous inspection results (by clicking on the button labeled "View Previous Inspection Results" located above the list of deficiencies) to see what the pattern of quality has been over a longer period of time.

- Compare the number of deficiencies cited to the state average.

- If a facility has received a deficiency citation in a particular area, be sure to ask questions about this area when you visit the facility.

- Obtain actual inspection reports at the facility itself or from the long-term care ombudsman program if you don’t have access to the web.

Cautions:

- Beware of choosing a facility with a very high number of deficiencies compared to other facilities in the area and the state average.

- Don’t assume that a “deficiency free” rating necessarily means that there are no problems with care at a particular facility.

Complaint Information

You should also delve deeper by gathering information about the number and kind of complaints that have been filed against a facility. Verified or “substantiated” complaint information is included along with the nursing home inspection results on the ‘Nursing Home Compare’ website. Consumers can also obtain information about complaints filed against a particular facility (substantiated or unsubstantiated) by contacting the state survey and inspection agency, the long term care ombudsman program, or through a website called Member of the Family at: www.memberofthefamily.net.

Staffing Information

‘Nursing Home Compare’ also provides information about the hours of nursing care provided at each facility. Staffing levels are a critically important factor to consider in evaluating the quality of care given at a facility. The information provided on nurse staffing levels includes national and state staffing averages, and the daily average for individual nursing homes.

Tips:

- Pay attention to the number of Certified Nursing Assistant (CNA) staffing hours. CNAs provide 90% of the hands-on resident care.

- Look for facilities with high levels of RN staffing. Studies show that RN involvement in care is important for quality.

- Visit the facility and ask staff and families about the actual numbers of staff available to directly care for residents on each shift.

Cautions:

- The staffing hours reported on 'Nursing Home Compare' include not only direct care from nurses and nursing assistants but also administrative nursing time. This makes it difficult for consumers to know how much direct care residents are receiving.

- The staff hour data used for ‘Nursing Home Compare’ self-reported by the facility and is not audited for accuracy.

Quality Measures

‘Nursing Home Compare’ also provides information on “Quality Measures.” To view the quality measure information on the website, select the nursing home using the search criteria from the homepage and then click on the tab labeled "Quality.”

“Quality Measures” provide important information; however, they are just one piece of the puzzle in choosing nursing home care. The measures are meant to provide indicators of quality care and comparative information on how well a facility is caring for its residents in key areas. Measures include 11 indicators for chronic care or long-term residents, and 3 indicators for acute care or short stay residents. The measures use data taken from quarterly assessments of individual residents done by the facility. The information gathered from the individual’s assessment is then combined with the assessments of the other residents in the facility to produce a facility-wide measure for each category. All of the quality measures consider the residents’ conditions during days prior to the assessment date. Quality Measures are designed to provide comparison information among facilities and are not intended as a nursing home rating system.

You should use quality measure information as one indicator of care; however, the importance of actually visiting facilities and talking with residents, family members and staff cannot be overemphasized. A listing of each indicator is below as well as comments and questions to assist you in assessing what the measure means for resident care. Discuss questions about these measures with a variety of people, including the ombudsman, facility staff, and others you talk to about the facility.

Measures for “Long-Stay” Residents

  “Long-Stay” residents are those in an extended or permanent stay in a nursing home.

A high percentage score on Quality Measures 1 through 4 may indicate there is not enough staff available to attend to residents' individualized plans of care.

1.    Percentage of residents whose need for help with activities of daily living (ADLs) has increased. A high percentage may indicate that residents are not encouraged to do things on their own, such as feeding themselves or moving from one chair to another. Ask questions about how resident independence is promoted.

2.    Percentage of residents who spend most of their time in bed or in a chair. A high percent here may indicate that there is not enough staff to assist residents with getting dressed and out of bed or that there are not organized activities for residents. Ask questions about who is responsible for getting residents up and dressed in the morning and when.

3.    Percentage of residents whose ability to move about in and around their room worsened. Nursing home staff should encourage residents to do as much as possible on their own and to engage in activities. Again, ask questions about how staff provide assistance to promote resident independence.

4.    Percentage of residents who are physically restrained. Studies show that restraints are detrimental to resident physical and mental well-being. Restraints are often used to compensate for a lack of adequate staff to attend to resident needs and safety. A high percentage in this category is a red flag. You should ask staff what methods, other than restraints, are used to provide a safe environment for mobility. Restraints may not be used without a doctor’s order.

 A high percentage in Quality Measures 5 to 7 may indicate that there is a lack of adequate staff to toilet residents on an individualized schedule.

5.    Percentage of low risk residents who lose control of their bowels or bladder. Loss of bowel or bladder control is not a normal sign of aging. Ask questions about whether residents are toileted on an individual schedule, and how bladder and bowel movements, and food and fluid intake are monitored.

6.    Percentage of residents who have/had a catheter inserted and left in their bladder.     A catheter should only be used if it is medically necessary - not to compensate for inadequate staffing levels to toilet residents.

7.    Percentage of residents with a urinary tract infection (UTI). UTI's occur when bacteria builds-up around a catheter or when the area where waste leaves the body is not kept clean. Ask questions about attention to resident personal hygiene, infection control and treatment procedures if you see a high percentage of residents with UTI's.

8.    Percentage of high risk residents who have pressure sores. A high percentage on this quality measure may indicate that residents are not being repositioned as frequently as necessary. Residents should be repositioned at least every two hours. Ask questions about how often residents are repositioned, toileted, or have diapers changed and how fluid intake is monitored.

9.    Percentage of low risk residents who have pressure sores.  A high percentage on this measure may indicate that staff are not encouraging residents to reposition themselves. Ask questions about how residents who are mobile are encouraged to change positions and how frequently residents are toileted.

10.   Percentage of residents who have become more depressed or anxious. A high percentage in this measure may indicate that residents lack meaningful activities and/or that anxiety and depression are not being monitored. Ask questions about ways staff monitor and treat residents’ depression and specifics on available activities for residents. Activities should be offered based on what residents choose.

11.   Percentage of residents with moderate to severe pain. A high percentage here may indicate that residents do not receive regular pain assessments. If residents are in pain, it should be addressed quickly. Ask staff how frequently residents receive a pain assessment and how quickly medications are prescribed for pain management.

Measures for “Short-Stay” Residents

“Short-Stay” residents are those needing short-term skilled nursing care or rehabilitation, but who are expecting to return home.

1.    Percentage of residents with delirium. Delirium is severe confusion and rapid changes in brain function, usually caused by a treatable physical or mental illness. A high percentage on this measure could mean that nursing home staff does not adequately deal with symptoms of delirium. Each nursing home should have a plan for helping residents who suffer from delirium. You should ask staff about their plan for handling and preventing delirium.

2.    Percentage of residents who had moderate to severe pain. Residents should always be checked regularly by nursing home staff to see if they are having pain. If residents have pain it should be addressed quickly. Ask staff how frequently residents receive a pain assessment and how quickly medications are prescribed for pain management.

3.    Percent of residents with pressure sores.  A high percentage on this quality measure may indicate the residents are not repositioned or encouraged to reposition themselves frequently. Ask questions about how often residents who are immobile are repositioned and toileted to prevent pressure sores from developing and how residents who are mobile are encouraged to move about.

Tips:

- Compare a facility’s score with others in the area or state to see how it measures up.

- All of these quality measures are negative measures. This means they measure a condition that is undesirable. Consumers should look for facilities that score below the state average – and the lower the better.

- If you have questions about the quality measure information that is provided, call 1-800-MEDICARE, or contact your State Quality Improvement Organization (QIO).

Cautions:

- Don’t assume that the information provided is 100% accurate. These measures are based on facility-reported information that is not independently audited for accuracy.

- These measures only suggest good or bad care. Also, even when these measures show percentages lower than the state average in one area (e.g., prevention of pressure sores), they don't necessarily mean there will be lower percentages in other areas (e.g., prevention of incontinence).

Here's what to look for on your visits:

Using your senses -- sight, hearing, smell, touch:

¨ Do you notice a quick response to call lights?

¨ Are there residents calling out?  If so, do they get an appropriate response from staff?

¨ Do the meals look appetizing?  Are residents eating most of their food? Are staff patiently assisting residents who need it?

¨ Are there residents in physical restraints (formal or informal devices that tie residents to beds, chairs, and wheelchairs)? Why?

¨ Do resident rooms appear to reflect the individuality of their occupants?

¨ Are rooms, hallways, and meal tables clean?

¨ Is there cheerful, respectful, pleasant, and warm interaction among staff and residents?

¨ Does the administrator seem to know the residents and enjoy being with them?

¨ Do staff and administration seem comfortable and peaceful with each other?

¨ Do residents look clean, well-groomed, well-fed, and free from bruises?

¨ Do many residents seem alert? happy? peaceful?

¨ Are residents seated comfortably?

¨ Is the home free from any unpleasant smells?

¨ Are residents engaged in meaningful and pleasant activities by themselves or with others?

Things you can ask of staff:

¨ Does each shift have enough help to be able to care for residents as they’d like?

¨ Do they enjoy their work? Are their ideas and information solicited and valued by supervisors?

¨ What activities are residents involved in?

¨ Are staff permanently assigned to residents?

¨ Are many of the staff from temporary staffing agencies?

¨ How are the nursing assistants involved in the care planning process?

¨ Is the facility currently implementing any “culture change” or “Pioneer Network” practices? (For more information, see www.pioneernetwork.net or call  585-924-3419.)

¨ How much training is given to staff? Is it enough?

¨ How often do residents who need it receive assistance with toileting or have their disposable briefs changed?

¨ What approaches does the facility use to prevent use of physical or chemical restraints?

¨ How does the staff assure family and resident participation in care planning meetings?

¨ What does the facility do to encourage employee retention and continuity?

¨ How long has the current administrator been at the facility?

¨ Has the facility undergone any recent changes in ownership or management?

¨ Does the facility provide transportation to community activities?

¨ What kind of therapy is available to residents?

¨ Can you give me an example of how individualized care is given to the residents?

¨ Is there a resident and/or a family council?  Will the facility give you contact information for the leaders of these councils?

¨ What happens if someone has a complaint or problem?  Are family/staff conferences available to work out a solution?

¨ Are residents involved in roommate selection?

¨ Who decides where residents sit for meals?  

¨ Under what circumstances might a resident be transferred to another room or unit or discharged?

¨ Does the facility employ a professionally qualified social worker? (“Professionally-qualified” means with a bachelors or masters degree in social work.)

Things you can learn from talking with other residents and their families:

¨ Are residents treated with respect and kindness?  

¨ Are residents helped with meals?

¨ Does the facility respect the resident’s wishes about their schedule (bedtime, baths, meals)?

¨ Is attention given to residents at night if awake? Is there anything for them to do?

¨ Does the resident have the same nursing assistant most days?  

¨ Is there a family or resident council?  If so, is the council led independently by families or residents or is it directed by staff members?

¨ Are staff responsive to resident requests? Do they assist the resident with toileting?

¨ Are snacks available to residents? Fresh fruit?

¨ Do residents participate in care planning conferences?  Are his or her opinions valued?

¨ Has the resident had missing possessions?

¨ Who handles resident or family member concerns? Is that person responsive?

¨   Does the resident get outside for fresh air or activities as much as s/he wants?

¨   What is best/worst about living in the home?

The importance of fire safety in nursing homes:

A nursing home, like any institution, should have plans in place regarding fire safety precautions to ensure the safety of residents, staff, and visitors. This is especially important for nursing home residents who are frail, ill, may be unable to walk without assistance, or are immobile. Unfortunately, despite the importance of automatic sprinkler systems, new federal regulations regarding fire safety standards in nursing homes issued in January 2003 do not require that all nursing homes have sprinklers. Only those facilities recently constructed or undergoing major renovations or modernization projects are required to install sprinklers. Below are some questions to ask and things to look for regarding fire safety during your nursing home visits.

¨ Is the building well maintained?  Are hallways and doorways clear of clutter, paper products and debris.

¨ Are sprinklers, smoke detectors, and emergency lighting systems installed in the facility?  Are these systems all in working order and how often are they tested to make sure they are functioning?

¨ Is there an evacuation plan in place, are staff aware of the plan, and are they drilled on the plan?

¨ Is there a notification system in place that alerts the fire department should a fire break out?

¨ What is the facility's smoking policy?

– What is the staff to resident ratio during all shifts?  Fires usually occur during the night when staffing is most limited.

¨ What is the plan for notifying family members should there be a fire?  

The importance of knowing the facility's emergency evacuation plan:

A nursing home, by law, is required to have emergency evacuation plans in place in the event of a natural or man-made disaster. When visiting a nursing home you should inquire about the facility’s emergency preparedness and evacuation plans. These plans should be very detailed. Below are some questions to ask staff about emergency preparedness plans.

¨   The plan What is the facility’s emergency plan for evacuation and for “sheltering in place”? Plans will be different for hurricanes, tornados, and terrorist attacks.

¨  Staffing concerns Are there enough staff to carry out the evacuation plan during all shifts? What are the training procedures for staff related to emergency evacuations? Are evacuation drills practiced during all shifts?

¨  Coordination with other resources How is the plan coordinated with other facilities in the area? Are there contracts in place with transportation and other facilities to provide housing for displaced residents? Are all the facilities contracted with the same transportation company and if so does that company have enough vehicles to accommodate all the facilities? How is the plan coordinated with other community resources, the city, county, and state emergency management agencies?

¨  Supplies What type and how much emergency supplies does the facility have on hand? (food, generators, flashlights, water, oxygen, etc.) If the facility needs to be evacuated, are there plans for supplies to be transported? Can residents have their own emergency supplies in their rooms?

¨  Resident information How are the residents informed about the plan? How will residents be identified in an evacuation? How will information about the resident and supplies such as medications be transported? Will these go with the resident or separately?

¨   Role of the family  How and when will family members be notified about evacuation plans? How can family members be helpful in an emergency situation? Can family members meet the residents at a designated location and/or can they come to the facility to assist? Family members have the right to evacuate their loved-one on their own and move them to a special needs shelter if they choose.

Information that all nursing homes must post and make available to residents:

When you visit a nursing home, check to make sure the following information is clearly posted and visible. If this information is not easily accessible, you should ask the staff where this information is normally posted.

¨ Daily staffing for licensed and unlicensed nursing staff for each shift.  As of January 2003, all Medicaid and Medicare certified nursing homes must publicly post the number of nursing staff they have on duty to care for residents on each daily shift. Licensed and unlicensed staff include: registered nurses, licensed practical nurses, and nurse aides.

¨ Name and contact information for all State client advocacy agencies. Included in this group are the State Ombudsman program, the state survey agency, the protection and advocacy network, and the Medicaid Fraud Control Unit.

¨ Results of the most recent state or federal survey. All facilities must make recent survey information available and easily accessible, where individuals wishing to examine survey results do not need to ask for them. Easily accessible means in a place, such as the lobby or other areas frequented by residents, family members, and the public.

Family Involvement: Getting Good Nursing Home Care

Once your loved one is living in a facility, your continued care, support, love, and involvement in his or her life are absolutely key to getting good care there. Make sure you:

¨ Visit frequently and encourage others to visit;

¨ Speak up to raise concerns and compliments;

¨ Attend quarterly care plan conferences and advocate for individualized care;

¨ Follow up on the agreed upon care plan. Make sure the resident’s doctor knows what is in the plan. Notice if the plan is not being followed and request another meeting if necessary;

¨ Get to know the staff and help them get to know the resident. Share details about the resident’s likes, dislikes, and daily routines;

¨ Participate in family council meetings if a family council exists, or seek out other family members to organize one;

¨ Make contact with your community's long term care ombudsman, any local citizen advocacy groups and become familiar with the state and federal laws and regulations that apply to nursing homes and;

¨ Document (date, time, persons involved) any problems you might observe so that managers, the ombudsman, or state survey agency can investigate.