What is Good Care?
Defining good or quality long term care can be difficult, especially when there are so many settings and types of providers that that provide the care. Richard Birkel from The Rosalynn Carter Institute for Caregiving describes six elements of good long-term care in any setting (1). He states that an additional two elements are required when defining good care in the community. We list the eight elements here and add that good care is consumer defined and driven, and thus is unique to every care receiver and family caregiver. The elements of good care state that that the care be:
1. Safe - for both caregivers and care-receivers
7. Shared - between paid and family caregivers
8. Coordinated - communication is respectful and clear among caregivers and that transitions between care settings are clear, documented and integrated.
Remember that above all else, long-term-care receivers do not lose their civil or human rights. They should be allowed as much dignity, independence, and control over their own lives and choices as is possible.
Indiana Medicaid lists members' rights and responsibilities on this site: http://member.indianamedicaid.com/members-rights--responsibilities.aspx
Ask nursing facilities, assisted living facilities, day care facilities, and home care agencies to provide you with a list of patient rights.
Tips for Getting Good Care
The following are tips to help you get quality home care for a loved one (in no particular order):
1. Educate yourself. Learn what you have the right to expect!
Familiarize yourself with the regulations, your loved one’s rights as a patient/client, and your rights as a family member.
Ask for a copy of policies and procedures from care providers.
Read the provider contract to learn about the provider's responsibilities.
Ask for a copy of the care-receiver's rights.
2. Share information about your loved one with home care staff.
The more the staff know about your loved one, the better care they can provide to meet your loved one's needs. Make sure you tell them how your loved one likes care done, approaches that work, what distresses him or her, what calms him or her down, things he or she likes/dislikes, etc.
It’s a good idea to ask the professional care team what additional information they need from you to help them care for your loved one.
3. Participate in the care planning process.
Care planning involves the development of a plan of care that describes the needs of the care receiver and the services, treatment, and care to be provided. Once a care plan is developed it is evaluated and revised periodically. (Some providers, e.g. adult day care centers, may have another name for the care plan.)
If the care receiver's services are paid for by Medicaid Waiver or CHOICE. The care plan has to be reviewed by the Area Agency on Aging case manager and updated at least every 90 days or more often if there are changes in your loved one’s condition or a change in the services your loved one needs or wants.
Care plan participation
Your loved one has the right to participate in the development of his or her care/service plan. If your loved one wishes, or if your loved one is unable to make health care decisions and you have the legal authority to do so, you can also participate. Family members who serve as legal representatives for care-receivers who no longer have decision-making capacity should make a point of participating.
Participation in the care planning process is very important because it shapes the care your loved one will receive and gives both you and your loved one a chance to ask questions and raise any issues.
Tips for care plan participation
4. Ask that the same caregivers be assigned to care for your loved one most of the time.
This is called consistent assignment and can improve your loved one's quality of care because the staff person gets in-depth knowledge of your loved one's needs and preferences.
5. Know what care your loved one is supposed to receive.
Getting a copy of the care/service plan will provide you with this information. Make sure the care receiver's personal physician has a copy of the care plan. It is a good idea to also share the care plan with all physicians treating the care receiver. Ask for their input, and if they have suggestions for increased care, ask for orders for that care that you can take to the provider.
If you have not already done this with your loved one's physicians, learn what medications your loved one is being given, the dose, and when it is supposed to be given. You should also learn why the medication is being given so you can know whether it is working.
6. Monitor your loved one’s care.
Once you know what services and treatments are to be given, you can oversee your loved one’s care to make sure the right care is given at the right time in the right way.
Observing your loved one, and if possible, periodically observing the care being provided.
Talking with your loved one and staff about how things are going.
Reviewing the records kept by the facility or agency. Your loved one and you, if you have the legal authority or your loved one’s permission, have the right to look at the medical records. Ask for a copy of the policy regarding accessing records.
When reviewing the records look for the following:
Information about your loved one’s condition, progress, and status.
Any problems you are not aware of and what is being done about those problems.
Whether your loved one is getting the care and services outlined in the care plan.
7. Develop a positive working relationship with staff.
Get to know the staff.
Learn the names of the staff members who have the most personal and ongoing contact with your loved one. These people are called the direct care staff and can be certified nursing assistants (CNAs), home health aides, personal care attendants; or therapists - the designation will change with the setting where your loved one receives care. Learning to speak and work effectively with this people and their supervisors is key to receiving the kind of care you desire for your loved one.
Treat staff with respect.
Show appreciation for good work! A "thank you" goes a long way.
8. Communicate effectively!!
Find out the name of the person at the facility or agency whom you should contact and the best time to do so when you have information to share or questions to ask. Usually this is the director of nursing at nursing facilities or the home care nurse at a home care agency. Find out who this person is in other care settings. This is the person to call should you question the type or quality of care being given.
Establish a system of communicating with the nurses, aides and others who come into contact with your loved one. When using home care, having a written communication log that remains in the home can be one effective method for assuring accurate, two-way transmission of information.
Consider keeping a three-ring notebook that has a complete medical history of your loved one and can be used to record each doctor’s visit and medical procedures, such as blood tests and X-rays. Ask the aides, nurses and other caregivers if there is anything specific that should be recorded in the notebook. Ask them to tell you of any change in medical information, especially if a doctor will be seeing your loved one without you present. Ask about new symptoms that anyone has noticed and about medication compliance. Make sure to add information or forms that come from a medical appointment so you are sure to have all the information for your loved one in one place. This will help you answer questions from other doctors and caregivers, provide continuity if a caregiver leaves, and make it easier to monitor care.
Tell staff about any changes in your loved one’s condition or medication. Submit what you have told them in written form and ask that it be added to the records. (Check back later to see if this has been done.)
Leave emergency contact information with your phone number(s) and that of another family member/friend.
State what you mean clearly, politely, respectfully and in language that is free of blame and judgment. Speak up nicely, if something isn't done, or if it isn’t done the right way. How you communicate is just as important as what you communicate.
Reinforce positives. Thank staff when a problem has been addressed or when good care has been provided.
9. Keep a journal.
Write down the names of people you contact or talk to, phone numbers, dates, and information you have obtained. This can help you to solve problems and to track their severity.
Make notes about:
Changes in your loved one’s condition and appearance.
Any change in your loved one’s condition or incidents involving him or her.
Answers to any questions you’ve asked staff.
Any problems. Write down when the problem occurred, the people involved, what happened, where it happened, and indicate what staff said they would do about the problem. Include staff names if you know them.
Anything that is done or changes that are good and reflect on the quality of care. This will reinforce the good care when you speak to staff.
10. Connect with other families.
If possible, get to know the family members of other care-receivers. Join a family council in a nursing facility. Becoming acquainted with other families gives you the opportunity to compare notes about how things are going and to join together if there is a problem affecting not only your loved one, but other care-receivers as well.
11. Take action when there is a problem!
The sooner you address a concern, the better – problems that go unaddressed can build up over time and can become more difficult to resolve. Don’t be afraid to ask questions or voice concerns with the supervisor if you feel your loved one’s care needs are not being met.
Some of the material in this section has been adapted from Becoming An Effective Advocate for Care, published by the MetLife Mature Market Institute, in cooperation with the National Alliance for Caregiving.
(1) Birkel, Richard, Defining Quality Care in Long-Term Home and Community Settings: A Working Paper, The Rosalynn Carter Institute for Caregiving. http://www.rosalynncarter.org/quality_in_long-term_care_a_working_paper/