When the Caregiver Role Changes to one of Advocate

January 24, 2013
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Suzanne Paolucci, LCSW, Elder Care Coordinator

Families often feel that once their loved one is placed in a facility their role in taking care of their loved one is over and done and that the facility is now in charge of their loved one’s care. This could not be further from the truth. In fact, their role as caregiver takes on an even greater importance- one of advocate. I often attend care planning meetings for our Life Care Planning clients and I can personally attest to the importance of a family member’s active presence in their loved one’s care. An advocate is crucial for individuals who cannot speak for themselves and is defined as: one that pleads the cause of another; one that defends or maintains a cause or proposal or one that supports or promotes the interests of another. I feel strongly that a client’s son’s persistent pleading and defending of his father’s well being may have saved his father’s life. In a place where Doctor’s are to “do no harm,” the son was very concerned about the care his father was receiving. From a professional standpoint, after reviewing with the son his father’s treatment and seeing firsthand his father’s condition, I felt the son’s concerns were valid and required questioning of the care plan. This was not an easy task on the son’s part as challenging the medical profession can be daunting but his persistence did pay off. This week I was so pleased to visit a brighter, healthier looking gentleman so different from the shell of a person I saw weeks prior. This is a happy ending, but it worries me that there are family members who do not know that they have every right to question and receive answers to their loved one’s care. The following are some professional suggestions to help caregivers advocate the best they can for their loved one’s cause:

1. If your loved one is in a nursing facility it is important to know your loved one’s rights
Dignity, respect, quality care and a comfortable living environment are just a few of the rights afforded to those living in a facility. The following is a complete list as put forth by New York State. It is worth viewing or reviewing. Knowing your loved one’s rights will help you become more aware of what the facility’s responsibility to your loved one is. http://www.health.ny.gov/facilities/nursing/rights/docs/your_rights_as_a_nursing_home_resident.pdf

2. Make good use of your loved one’s Care Planning Meeting
Family’s often go to these meeting with very little understanding and preparation of what the purpose of such a meeting is and thus are not fully prepared to address their loved one’s situation. A care plan is a road map of sorts, providing goals, and directives for achieving those goals, for residents, families, and facility staff. A care plan is required by the 1987 Nursing Home Reform Law at any skilled nursing facility (SNF) that accepts Medicare or Medicaid. The facility’s care plan team must complete an assessment within the first 14 days of a resident’s stay or within the first seven days if the stay is paid for by Medicare. Some facilities will schedule Care Planning meetings on a yearly basis after the initial Care Plan, but should re-schedule a meeting if there are two significant changes in a resident’s care. I always encourage our family members to schedule a Care Planning meeting as often as needed if they feel their needs or concerns are not being met. The following is a direct link to a very informative article on the assessment and care planning process. It will help you prepare for the meeting, know what to expect from the staff, and what questions to ask to insure your loved one is getting the best care possible.

Our Advocates Checklist can also help you to prepare for Care Plan meetings.

3. Residents should never be abused or neglected
Family members may easily recognize if their loved one is being physically abused. However abuse and neglect can also include less obvious forms such as psychological abuse, berating, ignoring, ridiculing or deprivation. For example, if a physically incapacitated individual is left to lay in one position all day without being re-positioned and they then develop a bed sore this act could be considered neglectful. This resident has now been exposed to the risk of infection and possible death due to lack of care. If you are concerned that your loved one is not getting proper care there are certain steps you can take:
• First speak to the assigned nurse or social worker to alert him or her to your concerns. If you feel it is necessary request a Care Planning meeting as quickly as possible and find out what steps are being done to rectify the situation.
• If you are not satisfied with the outcome, alert the nursing home administrator to see what additional steps they may take to rectify the situation.
• If you still remain concerned, contact your loved one’s local ombudsman. Long-term care ombudsmen are advocates for residents of nursing homes and assisted living facilities. They are trained to resolve problems. Every facility should have posted the name of your facility’s assigned ombudsman in an obvious place. I see a lot of these signs posted by the elevators or when you first enter a facility. Or you can go on line at http://www.theconsumervoice.org/ombudsman/newyork.
• You also have the right to file a formal complaint with the NY State Department of Health. The most serious complaints and incidents require Department investigators to conduct interviews, review medical records, and other facility documentation and perform other activities on-site at the nursing home. The investigation will also determine whether a nursing home has failed to meet federal or state regulations. In cases where the Department of Health determines that the nursing home violated a regulation, the Department will issue a citation to the nursing home. The nursing home must then submit a plan of correction that is acceptable to the Department of Health and follow this plan to correct the deficient practice

As you can see, being an advocate for a loved one in a nursing home is a very important job. If you feel you cannot do it alone, there are individuals out there to help you advocate. We encourage you to contact our office to further discuss how we may be of assistance to you and your loved one.

For more information and tips on how to be a better advocate for your loved one you can review the following Client Memorandum: When a Loved One Enters a Nursing Facility.

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