I am the Resident

Chapter 2 - The Right to Participate in Their Care Every resident in a long-term care community has a right to participate in their care. With person-centered care becoming the standard level of care in the United States, a resident's right to participate in his or her healthcare decisions has become the goal for all aspects of a resident's care. However, in the past, a resident's care had been dictated using the "medical model"; this allowed a medical team to make decisions that they felt were in the best interest of the resident, even if the resident did not agree. This is a stark contrast to "person-centered" care which allows the resident to be the primary decision maker regarding their own care. While there are many ways a community can ensure that residents can participate in their care, the following list shows the areas that I have found to be vital for the person-centered care model and where I often found related to resident complaints. Care Plans A care plan is a meeting required under Federal Law for skilled communities that accept Medicare and Medicaid: every three months the staff meet to come up with a plan of care for that resident. The staff at a skilled care community have 14 days to do an initial assessment of the resident; the first care plan meeting should be scheduled within 7 days of that initial assessment. Care plan meetings are required every three months or whenever there is a significant change in a resident condition. Residents have a right to participate in their care plan. A care plan meeting generally includes the following: The Care Plan Coordinator (sometimes called the MDS Coordinator). The social worker. A member of the nursing staff. The certified nurse's aide (very important, the CNA provides the most direct care and often times knows the resident the best). A member from dietary. Activity Director. A therapist (provided the resident is receiving therapy). A family member. An advocate to represent the resident. This is oftentimes a long-term care ombudsman but could be any professional or friend the resident wishes to advocate for them. The most important participant: The Resident. If a family member wants to attend the care plan, the community should work with the family member, within reason, to find a time to have the meeting when the family can be present. The only reason a family should not be included in the care plan meeting is if the resident has told the staff that they do not want their family to attend. During a care plan meeting the staff should give updates on how the resident is progressing and listen to any concerns from the resident or their family. The staff should go over the resident's care, list any goals they are setting, and the action plans for achieving those goals. The family and resident can also address any concerns or problems they are encountering with their care. This is a time for the resident to share with their family and staff what constitutes "quality care", including things like what they enjoy doing, and what their preferences are.1 A resident has the right to make their own medical decisions. Residents have the right to state their wishes concerning medical decisions. This is where having advanced directives can be very beneficial for residents. Advanced directives can define a resident's wishes should they become unable to speak for themselves. These decisions can include medical decisions including but not limited to the following: The use of feeding tubes. Antibiotics. Chemotherapy and radiation. Medication(s) a resident is taking. Participation in therapy. Whether or not the resident wants CPR. The decision on life support, ventilator. This is not an exhaustive list by any stretch, but it does provide an idea of what conversations need to take place. Sometimes the staff or a family might feel like a resident is making a poor decision regarding their care and should not be permitted to make decisions about their care as a result. However, each person has the right to decide the course of their own treatment, even when it contradicts what someone else thinks. If the resident is competent, that resident has a right to make any decision they choose, even if others feel like they are using poor judgement. Example 3 - Resident's Right to Choose I was called into a situation to advocate for a woman who wanted her feeding tube removed. When asked why she did not want the feeding tube she said it hurts. The resident's doctor said, feeding tubes don't hurt. I said you don't know if the tube in her stomach is hurting her, she is competent and is telling me it does hurt so there is a problem. The doctor then told me that he legally could not remove the tube, which was NOT true. I told the long-term care community that under the federal law she had a right to refuse any treatment and they needed to make arrangements to send her out to the hospital and have the tube removed. The skilled home had the feeding tube removed and later I found out that the feeding tube was not being used with her consistently. The feeding tube had been kept in so that if she stopped eating in the future, she would not need to have it reinserted. Example 4 - A Resident's Dying Wish Honored Another case involved a woman who was 101 years old who was dying. Her dying wish was to be placed in hospice where she knew her wishes would be honored. The home told me that her doctor did not want to write an order for hospice because as a medical doctor his job was to save lives, not to end them. I spoke with the staff and family and recommended that they fire that doctor immediately and assign their medical director. They followed those recommendations, and the woman was in hospice within 24 hours of the medical director taking over. Sometimes if an individual's doctor is not willing to honor the wishes of your loved one, it is time to find a new doctor. Example 5 - It's all About the Resident's Choices I was once called to a community because of a woman who kept pulling out her feeding tube. Every time this woman pulled out her feeding tube, the medical team decided to reinsert the feeding tube. Another advocate and I drove to the community to investigate further; upon arrival, we were asked to give our opinion on what should be done. The administrator of the community wanted to know if they should continue to replace the feeding tube each time this woman pulled it out. When we arrived, we found the woman in a Geri-chair (these are large, padded, wheeled based chairs that can recline and are designed to assist individuals with limited mobility.) The staff had dressed her as if she were attending a wedding: earrings and jewelry, makeup, the whole bit. This woman was unable to communicate her wishes despite attempting all forms of communication. We then met not only with the staff, but also the doctor, her priest, and her agent under her Power of Attorney. When we examined her healthcare Power of Attorney, we realized she had stated clearly that she did not want a feeding tube. When we asked why it was put in originally, the doctor said that the woman had a stroke; they thought it would only be needed in the short term because the prognosis following the stroke was positive: she would likely be able to eat on her own. In addition to the healthcare Power of Attorney statement, her agent under her Power of Attorney also had a letter from this woman stating that she never wanted a feeding tube to be placed in her. Everyone agreed that this woman never wanted the feeding tube, and that it was clearly against her wishes to have one at all; that may have been why she kept trying to take it out. Plot twist: this woman had been on a feeding tube for over two years! We advised the home that the feeding tube should not be replaced the next time she pulled it out - she clearly did not want it. To our surprise, the community said that it was against their policy to withhold hydration and nutrition. I asked the Administrator of the home if this woman had this healthcare power of attorney when she was admitted; the answer was "yes." Then I asked if the Administrator(s) of the community, staff, or literally anyone there had told this woman the community would not honor her wishes and would require her to move if she ever chose to have the feeding tube removed while this woman was still in the admission process and could change her mind regarding which community to select. The answer was "no." So, while this woman was selecting a community, nobody told her the one she selected would have policies against her healthcare Power of Attorney. I ended the conversation by informing the community I did not feel like they could discharge her for exercising her wishes, particularly when she was never told that they would not be honored. The social worker called me...