We take our personal rights for granted. However, when a family member or a friend moves into a long term care nursing facility the question is often asked whether the family member or friend has any rights as a resident of such facility.  Federal law, Section 483.10 of the Code of Federal Regulations http://cfr.vlex.com/vid/10-resident-rights-19811580 requires that long term care nursing facilities must protect and promote the rights of each resident by providing specific, enumerated rights.

For example, in the State of Maryland, mandated rights of residents residing in long term nursing facilities are extensive and include:

• The right to choose one’s own physician if the physician agrees to abide by the facility’s policies and procedures.
• The right to be fully informed in advance about care and treatment; the right to participate in planning care and treatment; and the right to consent to or refuse treatment.
• The right to be free from physical or chemical restraints unless required to treat medical symptoms or provide for the safety of the resident.
• The right to be free from physical, verbal, mental or sexual abuse.
• The right to be free from involuntary seclusion.
• The right to reside and receive services with reasonable accommodations of individual needs and preferences.
• The right to receive treatment, care and services that enhance the resident’s quality of life.
• The right to be free of interference, coercion, discrimination or reprisal when exercising such rights.
• The right to privacy in the resident’s accommodations, medical treatment and personal care.
• The right to receive or refuse to receive visitors, subject to reasonable nursing facility restrictions concerning visiting hours and places where the visitation can occur.
• The right to meet privately with representatives of State agencies including the Department of Health and Mental Hygiene and the State Long-Term Care Ombudsman Program.
• The right to voice grievances without being subjected to nursing facility reprisals.
• The right to access and purchase copies of the resident’s records. Such records would include medical records, social work records, etc.
• Rights concerning resident transfers and discharges. Generally, the facility shall provide notification of the transfer or discharge at least 30 days before the proposed transfer or discharge. The notification shall provide (1) the reason for the proposed transfer or discharge, (2) a statement that the resident has a right to request a hearing and how to request a hearing, (3) contact information for relevant State and local officials and (4) the right to seek legal counsel.¹

Residents in states other than Maryland should consult the applicable state laws and regulations governing resident rights in long term care nursing facilities and assisted living facilities. An excellent source of information would be the state long-term care and/or assisted living Ombudsman.

Arthur L. Lappen, Attorney

Maryland and DC

¹ Various sections  of the Code of Maryland Regulations including sections 10.07.09.08, 10.07.09.10 and 10.07.09.11 http://www.takingcareofmomanddad.net/NursingHomes/Regulations/

Tips for the Alzheimer’s Caregiver

A recent article by Melanie Haiken, Caring.com Senior Editor, www.caring.com/blogs/, addresses the subject: What to do when the doctor isn’t listening to you or the person you’re caring for, not carrying out your wishes when it comes to treatment and medication choices, or recommending drugs or treatments that seem inappropriate for much older patients. Here are a few examples.

• Sarah says her mom’s doctor tries to make her feel guilty when she asks to remove a medication from her mom’s regimen or refuses a procedure. Her mom, who is 90, is in late-stage Alzheimer’s, so she decided not to give Aricept and to refuse a colonoscopy, but had to fight those battles with the doctor who disagreed.
• Eileen feels it’s important to honor her mom’s decision not to take Aricept for her advancing Alzheimer’s, and told a story of her mom being admitted to the ER for a sprained ankle, then falling off the bed while having X-rays and shattering her heel and arm.
• Joseph says it is important to find a doctor with geriatric experience, and you may need to change doctors if the relationship is not working. If you do not know any doctors in your area with geriatric experience, you might try asking someone at a local senior center or assisted living facility; they usually have experience working with local doctors with expertise in aging.
• Jan reminds everyone to get an irrevocable POA for medical decisions and make sure you or someone else attends all medical appointments to advocate for the elderly patient.

Sometimes the problem does not lie within your control; what is wrong is that the doctor is not listening to you or not taking your loved one’s age or situation into account when making treatment decisions. In many cases, it is like a bad relationship; communication has broken down and you and your family member are not getting what you need.

Here are five signs it may be time to “break up” with your doctor:

1. You feel the doctor blames, ignores, or criticizes you or the person in your care
2. The doctor doesn’t respond to your feedback, or becomes defensive or unpleasant
3. It seems the doctor isn’t taking your family member’s pain or other symptoms seriously enough
4. You find out about treatments that can help that the doctor hasn’t told you about
5. The doctor doesn’t explain treatment options clearly, resulting in mistakes

If you have had a truly unpleasant exchange with your doctor, it is your prerogative to find a new doctor and ask the staff to fax over the request for records.

You will breathe a sigh of relief once you are dealing with a doctor who listens respectfully, answers your questions, accommodates your requests, takes your family member’s symptoms seriously, and works with you to develop a treatment plan you can all feel good about.

“Visit companions are commonly present in older adults’ routine medical encounters, actively engaged in care processes, and influential to patients’ satisfaction with physician care.”

Source:Consumer Reports on Health, October 2008, from the Archives of Internal Medicine, Medical Visit Companions as a Resource for Vulnerable Older Adults, 7/14/08

You may want a companion, however, if you or your loved one’s needs primarily relate to the activities of daily living:

• Keeping up the whole house (light, basic house cleaning; taking out the garbage; changing light bulbs; doing the laundry and making all the beds because the kids are coming to visit; etc.)
• Paying bills
• Shopping
• Meal preparation
• Transportation and friendship

The objective of the companion is to be your representative, an honorary family member.

Many home health agencies offer companion as well as CNA services. Experience tells us that this approach doesn’t work for companion care. If a company has primarily a medical model, its focus and attitude will remain medical.

Regardless of the approach you or your family take, Care for You® strongly recommends hiring a care coordinator or case manager. Especially when family members live in another town or state, care coordination can reduce stress and ultimately be very cost effective. Unlike you, a care coordinator doesn’t have to take time off work, or arrange and pay for transportation and other travel costs. Care for You® provides the following care coordination and case management services:

· Regularly check in with you and your loved one and the caregiver

· Give you or your loved one immediate access to someone who’s dedicated to the well-being of the person being cared for

· Research for services and activities

· Schedule appointments with physicians, insurers, therapists, pharmacists, banks, and contractors, visit these service providers, and arbitrate when necessary

· Provide a central point of communication among all parties with responsibilities that affect the person receiving care

· Identify and quantify your needs and wishes

· Reach an understanding about what Care for You® can provide, including anticipated cost and a schedule for services

· Give Care for You® the necessary information to find the Companion who best fits your needs.

Following the assessment, a permanent Companion will take responsibility for services, ranging from occasional visits to around-the-clock care.

If your support needs go beyond the number of hours an employee would normally work in a given day or week, Care for You® will establish a Companion team, so that you will still know who is coming at any given day and time. Our objective is always to place Companions with clients in a way that facilitates the building of long-term relationships.

If we missed a key expectation in the assessment process, we will revisit the needs and expectations that we agreed upon initially and make adjustments as necessary. Our intent is to foster long-lasting relationships. To that end, we will do everything we can to match you with a Companion who meets your needs.