Chapter 5: What Should Happen in the First Weeks

1.  Work with the doctor. 

Illinois requires that a new nursing home resident be examined by a doctor within 5 days before admission or 48 hours after entering the facility.  If she is a new patient, her doctor will need to examine her before entering new orders for her care.  To make sure that your mother’s first exam is thorough, try to meet the doctor when (s)he comes.  Talk to him/her about your mother's personal and medical history.  Your mother should be part of this discussion if possible.  

It is important that the doctor understand how well your mother can make — or participate in making — decisions about her own care.  Unless a court has said she is incompetent, or her doctor certifies in writing that she is not capable of directing her own care, all decisions are hers, not yours or the doctor’s. 

This does not mean the doctor must enter orders for care (s)he thinks is unnecessary or medically inappropriate.  It does mean your mother has the right to choose among kinds of care the doctor (or other professional staff) thinks are appropriate.  She also has the right to refuse any care she does not want.  As may all the rest of us, she may make choices the doctor or professional staff or even you believe are wrong or even stupid.  

Arrange for the doctor to get copies of any relevant medical records from your mother’s previous doctor, and arrange to have any relevant hospital records sent.  Make sure the doctor has seen your mother’s initial admitting or “transfer” orders. 

Make sure the doctor knows about any over-the-counter medicines, vitamins, or dietary supplements your mother takes.  The staff cannot give her any of these unless the doctor orders them to.  Even if she does not need the staff to help her (because she can do it herself, or you can help her,) it is important that the doctor knows exactly what she is taking.  This is the only way to be sure that nothing she is taking  reduces the effectiveness of any of her prescribed medications, or reacts with them in a way that makes her sick.  It also lets the doctor know if she is treating herself for symptoms (such as pain) that the doctor should know about.  

Sometimes the nursing staff are uncomfortable, and even hostile, about residents taking over-the-counter medication.  Sometimes they order residents not to take them and family members not to give them, and even confiscate them from residents’ rooms.  Of course your mother does not need a doctor’s order to take over-the-counter medicines by herself.  But letting the doctor know what she is taking, and having the doctor’s orders that say she may take whatever she is taking, can avoid arguments, and keep her from getting sick from a drug interaction.

Make sure the doctor knows about the terms of any durable power of attorney for health care, and/or living will, your mother has signed, or if your mother has a guardian.  The doctor needs to know who has authority to make health care decisions for your mother if she is not competent to do so.

Equally important, make sure the doctor will have no problem complying with the instructions in any document your mother has signed.  The most common problems occur when someone is terminally ill, and the doctor either does not know what his/her patient wants, or refuses to do what the patient has asked for.  

The doctor may ask you about, or you may want to bring up,  entering a “DNR” — Do Not Resuscitate -- order.  A DNR order tells the staff, paramedics, emergency medical technicians, or any other medical personnel what to do if your mother has difficulty breathing (or stops breathing,) and/or her heart stops beating.  She can make different decisions about whether she wants to get resuscitation to try to keep herself alive if she has difficulty breathing (or stops breathing,) but her heart is still beating, and if she wants resuscitation if her heart and breathing both stop.  Even with a DNR order, the staff is supposed to help your mother if she is choking.

Sometimes doctors decide by themselves to enter a DNR order.  This should not happen. If you do not want the doctor to decide on his own to enter such order, tell him/her so.  Authority to enter a DNR order should be given only by your mother if she is competent, by her health-care power-of-attorney if authorized to do so in the document your mother signed appointing this person, or by her health-care agent.  If your mother or her decision-maker are not sure what to do about this, the decision about a DNR order does not have to be made right away.  

Any decision that is made about a DNR order can be changed at any time.  If you or your mother say you want a DNR order and later change your mind, you must tell the doctor and then make sure the DNR order is removed from your mother’s file, and from any master list the facility has of residents who have a DNR order.   

To make sure that a DNR order is honored, the DNR order should be on a special form printed by the Illinois Department of Public Health.  If it is not on this form, paramedics/emergency medical technicians are required to call for instructions about whether to resuscitate a resident, and may start resuscitation while they wait for instructions.  So even if your mother already has a DNR order, she may need to get a new one written on a Public Health form to make sure it is honored.

Make sure you have a phone number to reach the doctor in an emergency.  Nursing homes in the Medicare or Medicaid programs are required to give you this information.

You should also have a frank talk with the doctor about the possible use of both restraints and psychotropic drugs on your mother.  Without being insulting, make sure the doctor knows you know that neither restraints nor psychotropic drugs may legally be used on a nursing home resident without the resident’s  informed consent, or the informed consent of someone legally able to act for her.  If you are acting for your mother, you should make it clear that you will not consent to the use of restraints or psychotropic drugs unless you are consulted about why they are needed, told the risks and benefits, and are able to decide at the time their use is suggested.  If the doctor will not agree to following the law on this matter, we suggest you find another doctor.  You should also tell the facility administrator and its medical director if the doctor they have recommended to you is unwilling to obey the law.

After her first examination, your mother’s doctor is required to see her at least every 30 days for the first 90 days she is in the nursing home, and every 90 days afterward.  


2.  The use of restraints.

A restraint is any device or technique that keeps someone from reaching any part of her body, or moving freely, and that the person cannot remove herself.  They include cloth ties, belts and vests; hand mitts; bars and trays on chairs; bed rails; and such practices as tucking a sheet around someone so tightly that she cannot move.  The practice in nursing homes for many years was to use restraints to keep residents from standing or walking.  Changes in federal and state law however, have forced nursing homes to reduce or entirely eliminate their use of restraints.   

Restraints can be dangerous.  There are almost always other ways that will keep your mother safer and happier than using a restraint.  

If you find your mother in any kind of restraint, or the facility staff or the doctor suggest using a restraint on your mother, you should read this fact sheet.


3.  The use of psychotropic drugs.

Psychotropic drugs are drugs that affect the way someone thinks, feels or perceives reality.  For many years, nursing homes automatically used psychotropic drugs to make residents “easier to handle” by keeping them sedated and quiet.  Changes in federal and state law have forced nursing homes to reduce the use of psychotropic drugs on nursing home residents.

If the facility staff or the doctor suggest that your mother use a psychotropic drug, or you learn that she has been given such a drug (for example, because she appears to be “zonked out” or is behaving oddly, and her records show she has been given a psychotropic drug), you should read this fact sheet.