If I told you that there was a law that permits nursing homes to tie elderly residents to their beds, place them in physical restraints, force them to take mind-altering drugs and other intrusive treatments, chances are you might say, “Yeah, but that was way back in 1892.” Would you be surprised if I told you the law was passed in 1992?
California passed Health and Safety Code §1418.8 in 1992. It is a law that allows physicians for nursing home residents to determine whether a resident lacks the capacity to refuse or permit medical treatment and staff to then administer treatment. Some facilities have interpreted this law to end residents’ lives through “do not resuscitate” orders or comfort care orders, whereby residents do not receive treatment, and die.
The good news is that a lawsuit has been filed against the California Department of Public Health (DPH) to find the law unconstitutional. According to Professor Mort Cohen, who represents several nursing home residents, “This statute singles out nursing home residents for intrusive treatment without notice or a chance to oppose. In California, we give these residents fewer protections than we do prisoners….”
In one of many incidents included in the complaint, a nursing home resident was asked, “Do you want to live or die?” When he didn’t answer, he had his feeding tube withdrawn, was placed in hospice and died. Another “unrepresented” resident was informed that the nursing home would call the police and have her friends charged with “kidnapping” if she left the facility to go on a picnic with them.
“So what can I do?” In order to prevent abuse, you must remain active in the care of your loved one. The following tips come from a loving daughter who wished that she had this information when her mother was in a skilled nursing home. It is her hope that some of the ideas shared below will assist you in improving the quality of care and life for your loved one.
1. Make your visits count
There is more to making your visits count than visiting frequently. Visit at different times and shifts and on different days of the week. It is also important to visit at mealtimes, when activities are planned, and definitely at night and on the weekends. These strategies are important in order to get a full picture of the patterns of care in the facility and the performance and attitude of care staff at different shifts. The unpredictability of your visits can also keep the facility on its toes.
2. Get to know the staff and build relationships
As part of your plan for visiting, you want to get to know all key staff on a first-name basis on all shifts that care for your loved one. One of the hardest things can be turning over the direct caregiving responsibilities to someone else, especially if you have been doing it at home for a number of years. Your new role is to provide emotional support to your loved one, to help the staff know your loved one on a personal basis and to be an advocate.
Generally, staff resent being told how to do their job but appreciate knowing more about what your loved one’s likes and dislikes are and what might have worked for you. Genuine praise can go a long way in building good relationships. When you observe a staff providing good care or handling a difficult situation well, tell them that you appreciate their quality service. Also, let the supervisors know about good staff performance.
Develop good working relationships with key administrative and supervisory staff. The director of nursing and charge nurses for the wing will be particularly valuable resources in understanding, questioning and promoting quality care in skilled nursing homes. The administrator or supervisors in residential care facilities or assisted living facilities are also key persons.
Know the facility’s policy and procedures on whom you should go to with concerns or problems. Bring your concerns forward as matters come up that need to be resolved. Do not wait until you have a lot of problems or major issues. Communicate frequently and openly. Again, offer positive feedback when concerns have been addressed or positive things are happening in the facility.
3. Be an active participant in all care plan meetings
The plan of care describes the strategies that the facility and staff will use to enhance, restore or maintain a person’s optimal physical, mental and psycho-social well-being. Care plans are based on assessments and need to be completed before or shortly after a person is admitted as a resident in a long-term care facility. Care plans are reviewed and updated whenever there are significant changes in a resident’s physical, medical, mental, behavioral and/or social conditions.
Skilled nursing homes have a quarterly review cycle while residential care facilities for the elderly are only required to review and update the care plan annually or when there is a significant change in the resident’s care needs.
The care plan meeting provides an opportunity to evaluate whether the plan is working and to make necessary changes to better meet the individualized needs of the resident. Some tips to make the care plan work for your loved one are:
• Personalize the needs and interests of your loved one.
• Make sure that all key players will attend the care planning meeting, including direct-care staff.
• Bring concerns and suggestions.
• Insist on concrete, measurable plans and timetable.
• Follow up the meeting with a written understanding of what is going to be done, by whom, and when.
4. Monitor care
Use the care plan to monitor the overall care of your loved one. Hold the facility accountable for carrying out the plan in good faith. As indicated above, an effective care plan will be concrete, with many areas to observe and monitor. It will give you many practical things to look for in the overall care and in specific care approaches for your loved one.
In monitoring care, consider using the following approaches depending on the circumstances:
• Keep notes. Write down important facts by answering who, what, when, where, and how questions. Describe what happened. Be as specific as possible. Use quotes if a person made an important statement.
• Check records. With the resident’s permission or if you are the legal representative or health care agent, you have the right to access and to obtain copies of the medical records, care plan, nursing and certified nurses aides’ progress notes, and resident’s file. Records can be important sources to see if the care that is planned for is actually being provided. Make sure that the records are an accurate reflection of what is actually happening and that the records are not being obviously changed or falsified.
• Obtain copies of relevant files whenever there is poor, neglectful or abusive care.
• Maintain close contact with the doctor. Get a second opinion or obtain assistance to interpret medical or resident records. Check on the medications that have been prescribed and monitor your loved one’s reactions.
• Make a physical inspection of your loved one. A non-intrusive way to do this is to give a back rub to your family member. It is nice for the family member and a good opportunity to inspect for signs of redness or sores. If necessary, take pictures and make complaints to the Ombudsman Program and to the appropriate licensing agency.
5. Act as an advocate for loved ones
At the heart of effective advocacy is knowledge of the rights of residents and your rights as the representative of the resident. These basic rights should be explained at the time of admission and should be posted in the facility. Some of the most important rights are the right to express concerns, to be able to make suggestions, and to make complaints without fear of retaliation.
In exercising these rights, strive to maintain a calm demeanor. Act with assertiveness. Be persistent. Ask for honest communication, and insist on accountability.
Listed below are some additional tips to make your advocacy more effective:
• Follow up on all concerns identified in monitoring care.
• Ask for meetings with key people to resolve problems. Plan carefully for the meeting by clearly identifying the results that you want. It is important to summarize your understanding of the agreed outcomes, persons responsible and timetables before the meeting ends. Whenever possible, put this summary in writing and ask that it become part of the resident’s file.
• Contact the Ombudsman Program to assist you in exercising your rights. The ombudsman is the resident’s advocate. A poster with the telephone number for the local Ombudsman Program must be prominently displayed in residential care facilities for the elderly and in skilled nursing facilities.
• File complaints with the appropriate licensing agency. You have the right to confidentiality in making complaints to both the Ombudsman Program and to licensing agencies.
Judd Matsunaga, Esq., is the founding partner of the Law Offices of Matsunaga & Associates, specializing in estate/Medi-Cal planning, probate, personal injury and real estate law. With offices in Torrance, Hollywood, Sherman Oaks, Pasadena and Fountain Valley, he can be reached at (800) 411-0546. Opinions expressed in this column are not necessarily those of The Rafu Shimpo.