Patient Teaching Guides
1. Take the pain medicine on a regular, round-the-clock schedule.
2. Take medications for sleep and anxiety (nerves) if needed.
3. If the pain worsens, call your hospice nurse. A nurse is available 24 hours a day, 7 days a week.
The patient's hands, arms, and feet then legs become cool when you touch them. At the same time, the color of the skin may change. The underside of the body may become darker and the skin may become mottled. This indicates that the circulation of blood is decreasing to the hands, arms, legs and feet and it is being reserved for the most vital organs. Keep the patient warm with a blanket, but do not use an electric one.
More time is spent sleeping. Communication and responsiveness is less. At times the patient may be difficult to arouse. This change is normal because the metabolism of the body is changing. During this time, sit with the loved one, hold his/her hand, do not shake or speak loudly, but speak softly and naturally. Plan to spend time with him/her when he/she seems most alert. Do not talk about him/her in the person's presence. Speak directly to the patient as you normally would, even if there is no response. Never assume the person cannot hear-hearing is the last sense to be lost.
The patient may seem confused about time, place, and who is present, even those very close to him/her. This is because of metabolic changes in the body. Do not ask the person who you are, but identify yourself before you speak. Speak softly, clearly, and truthfully when you need to communicate something important for the patient's comfort. Example: "It's time for your medication so you won't hurt."
This happens because the muscles involved are becoming relaxed.
This change is due to the decrease of fluid intake and the inability to cough up normal secretions. Turn the patient's head to the side and allow gravity to help with this. Gently wipe the mouth with a moist cloth. Lung and throat sounds do not indicate pneumonia or pain.
You may notice repeated motions such as pulling at bed linen or clothing. This is caused by the decrease in oxygen circulation and metabolic changes. Do not interfere with this. Speak in a quiet natural tone, massage the forehead, read to the patient, or play soothing music.
The body is conserving energy at this time. To eat or drink requires energy. Do not force or persuade the patient to take food or fluids. Doing this causes discomfort. Glycerine swabs or toothettes may help keep the mouth and lips moist and comfortable. A cool, moist washcloth on the forehead may also increase physical comfort.
A breathing pattern of shallow breaths with periods of no breathing for 5 to 60 seconds (called "Cheyne- Stokes" breathing) may occur. Periods of rapid, shallow, pant-like breathing may occur. This is caused by decreased circulation to the internal organs. You can raise the head, and/or turn the person on his/her side. Hold his/her hand. Speak gently.
There is a decrease in the amount of urine produced. The urine may become dark. This is caused by the decrease in the amount of fluids taken and a decrease of the blood circulating to the kidneys.
Emotional, Spiritual, Mental
1. Withdrawal
The patient may seem unresponsive, withdrawn, or in a coma-like state. This indicates a preparation for release, a detaching from surroundings and relationships. The patient is now beginning to "let go". Remember that hearing is the last sense to be lost. Speak in a normal voice, identify yourself by name, hold his/her hand, and say whatever is needed to allow the patient to "let go".
The patient may speak or claim to have spoken to persons who have already died; or to see or have seen places not visible to you. This does not indicate a drug reaction. The person is beginning to detach from this life and is preparing for the transition. Do not contradict, or argue about the claims. Perhaps it is real to the patient. Explain to the patient that this is okay and normal.
This could indicate that something is still unfinished and is disturbing and not allowing him/her to "let go". Help the patient to recall a pleasant event, read something comforting, play music, and give assurance that it is okay to "let go".
The patient may want to be with only a few or even just one person. This is a sign of preparation for release and affirms those from whom support is needed. If you are not part of the support, it does not mean you are not loved. It means you have already fulfilled your task and it is time for you to say "good-bye". If you are still part of the support needed, the patient needs your affirmation, support, and permission.
If the patient makes an "out of character" remark, gesture, or request, it indicates he/she is ready to say "good-bye" and is testing to see if you are ready to let him/her go. Accept the moment as a gift when it is offered. Kiss, hug, hold, cry, and say whatever you most need to say.
Giving permission to let go without making him/her feel guilty for leaving or trying to keep him/her with you to meet your own needs can be difficult. A dying person will normally try to hold on, prolonging discomfort, in order to be sure that those left behind will be alright. Give him/her assurance that it is alright to let go whenever he/she is ready. This is one of the greatest gifts you have to give at this time.
When the patient is ready to die and you are able to let go, then is the time to say good-by. This is your final gift of love. It achieves closure and makes the final release possible. It may be helpful to lay in bed with the person and hold him/her or to take the hand and say everything you need to say. Someone has suggested:
Forgive me.
I forgive you.
I love you
Thank you.
Goodbye.
Tears are a natural and normal part of saying goody-by. Tears do not need to be hidden from your loved one or apologized for. Tears express your love and help YOU let go.
MEDICATION ADMINISTRATION
Medication may require special responsibilities and precautions. These may include careful measurements and storage. Medication that is not taken as prescribed may not have the desired effect and may be harmful to the patient. Medication that is prescribed for one person may be harmful if taken by another.
There are certain rules that apply to the administration of medication.
- Make sure you are taking or giving:
The right medicine to
The right person
The right dose by
The right route at
The right time.
THE RIGHT MEDICINE
Always read the medication label first. Never try to take your medication in the dark. Sometimes medication bottles may look similar but contain very different kinds of medication. Tablets and capsules may change shape, size, or color. If your medicine looks different and you were not told that it would, call your nurse or pharmacist to verify you have the right medicine.
THE RIGHT PERSON
Make sure the correct name is on the label, the person for whom the medication was prescribed.
THE RIGHT DOSE
Look at the dose on the label. Make sure you understand what dose the doctor has prescribed before taking the medication. If the medication has to be given by unfamiliar method, such as a dropper, be sure you know how to read the measurements correctly. Call your nurse if you have any questions.
THE RIGHT ROUTE
Make sure you understand the route the medication is to be given. Usually the routes are by mouth, sublingual (under the tongue), or suppositories to be inserted rectally. Sometimes the patient will be prescribed medication to be given through a tube. The nurse will teach you how to do this, if this is needed.
THE RIGHT TIME
Medication is usually more effective if it is taken at the right time. The label will tell you how often the medication should be taken. It is important to take the medication at the right time. Some medicine is to be taken "around the clock"; other medicine "only as needed." The nurse will review with you the schedule for your medicines. Do not try to "catch up" if you miss a dose. Call the nurse or pharmacist for instructions.
-Ask questions about your medications.
-If you feel the medication is not effective, talk this over with your nurse.
-Report any unusual signs or symptoms to your nurse. The nurse will discuss your concerns with your doctor, if you wish.
-Some medications require other special precautions to avoid mistakes, misuse, or abuse.
-The "medicine cabinet" is the worst place to store medicine. The heat and moisture in the bathroom or kitchen can ruin your medicine. Never store any medicine in the refrigerator unless specifically directed to do so. All medicine, pills, and liquids, should be stored at room temperature, tightly closed, away from direct light, unless otherwise directed.
-Always store your medicine in a safe place and out of reach of children. It may be wise to lock up your medication to safeguard it.
-It is best if "outsiders" do not know you are taking certain medications or that you have them in your home.
-Labels on old medicine bottles should be removed and destroyed before putting the bottles in the trash. Old medicine bottles should be rinsed out before they are thrown in the trash.
-Some medications should be destroyed in the presence of another person when they are no longer needed. The nurse will help you know which medications require this special precaution. Your hospice nurse must keep records regarding the disposal of certain drugs.
-Medications that are in your home are your responsibility. Learn about your medications so that you can get the best benefit from the medication and avoid harm to yourself and to others.
-Payment for "related" medications
is one of the benefits of hospice care. Usually medications are provided in
supplies for one or two weeks at a time. Whenever possible, the use of generic
drugs is encouraged. If you have questions or concerns about this, ask your
nurse.
If you have any questions or concerns please do not hesitate to call your hospice nurse.