In our society most deaths do not occur in the home. So for many death is a distant, frightening experience, with increased hospice care available this pattern is changing and more people and families are choosing death at home as an alternative to the hospital. One of the main goals of hospice is to provide a comfortable death in the home surrounded by family and in a comforting environment.
Preparation for ones death can take can take days or a few months. As a person realizes his impending death he begins to separate or distance himself from family and the outside world. The person will be alone more, sleep more and communicate with others less. There is often a reviewing of ones life. It is important to give time for rest but also to maintain touch and talking to the person. You need to explain what you are doing when rendering personal care and encourage family to keep up communication as well.
The person preparing for death will eat and drink less and less. There is no longer the need for food and the body is shutting down. This is very difficult for the family and caregivers to accept, food is connected to nurturing and food is central to many celebrations, holidays etc. Food equates love and care. If the patient refuses food it does not mean he is starving. Decreased food intake is part of the natural dying process, often the person has dysphagia or inability to swallow. The body can no longer process food and fluids properly so forcing fluids and food is not a good idea. It is ok to offer foods sometimes the patient may want to eat. Ice chips and frozen juices ice pops etc can be soothing to a dry mouth.
Family members can be very frightened and have feelings of guilt as their loved one is dying. Do not point out that the patient is dehydrated or is not urinating etc. Instead try interventions that will bring comfort such as mouth care for a dry mouth, changing positions for comfort making sure that if the patient is in pain that someone is giving pain medicine. If you have questions or concerns call Alliance Care and ask to speak with the nurse or call the hospice nurse do not alarm the family with normal signs and symptoms of the dying process. Instead provide support to the family and offer comfort and let them know you are doing all you can to keep their loved one comfortable and pain free.
NORMAL SIGNS AND SYPTOMS OF IMPENDING DEATH AND APPROPRIATE CARE
Increased sleeping/ lethargy: The patient will have increasing time asleep and become more detached from others not always recognizing loved ones and caregivers. This is natural and you should talk softly to the patient and still explain procedures and care. Encourage the family to speak to the patient as well and say what they need to, provide privacy of needed. Giving permission to go is an important need, family members should tell the dying person it is OK to go and that they will be OK here. It is OK to say goodbye and natural to cry, tears should not be HIDDEN from the dying person. Tears express love and that the person will be missed. The patient may suddenly have a period of alertness after being very lethargic for days. Encourage the family to be around the patient if this happens and give the patient what they ask for. This is a common occurrence just before death
Incontinence- The patient may loose control of urine and stool, using adult briefs is recommended. A Foley catheter may be used but is not always indicated due to low urine output and potential for infection. Keeping the client clean and dry is the goal of the caregiver. Wash the patient using gentle soap and water and dry skin well, apply lotion and massage skin. The hospice nurse can provide you with skin protecting lotions if needed. If the patient is in a lot of pain ask the family to medicate the patient prior to bathing or changing him. Do not rub the skin hard, the skin becomes very fragile and prone to breakdown due to poor nutrition and hydration. Keep the patient covered, except for the area being washed so as not to chill the patient.
Urinary output- Urine output may decrease or stop altogether during the dying process due to decreased functioning of the kidneys. Urine may also be very dark and foul smelling, you may notice sediment or mucous in the urine. Again do not alarm the family there is no intervention except keeping the client clean and dry. If you have questions refer them to the hospice nurse or call the office and speak with the nurse.
Restlessness/ disorientation- It is common for the patient to become restless or confused during the dying process. He may pick at bed linens or grasp things in the air that are not there. Often a dying person will “talk” to people you can not see such as relatives that have died before him. Offer support to the family and continue to talk to the patient in a calm reassuring manner. Do not contradict or argue with the patient about what they see it is very real to them. This is a natural part of the transition from life to death. Encourage the family to say what they need to say and say goodbye, it is normal for the family to grieve and cry at this time. Tears are good medicine, encourage the family to cry if they need to.
Congestion- Breathing may become loud and labored due to a shift of fluid into the lungs prior to death as well as the inability of the person to raise up secretions or swallow them as normal. Raise the head of the bed and turn oxygen on if it is available. Suctioning does not usually help and may make matters worse. You can wipe excess secretions with a cloth and stay with the patient. You may have heard this called the “ Death Rattle” and it is very distressing to the family, you may ask them to call the hospice nurse who will offer reassurance and will probably come to the home at this time.
Skin Changes- The skin may become blue or purple due to decreased circulation during the dying process. Feet and hands may have a mottled appearance with purple or blue blotches starting at the fingers and toes and moving up the extremities. The skin may be cool or cold or the patient may have a fever at this time. The trunk may feel hot and the extremities cool, this is due to the body conserving blood circulation for the vital organs. Keep the patient warm but do not use electric blankets or heating pads which will burn the skin and will not help. If the patient has a fever sponge him with cool washcloths you may place cool cloths behind the neck, on the forehead, in the armpits and in the groin change them frequently with cool NOT COLD cloths. The family may give a Tylenol suppository but it will not have much effect. Again this a NORMAL part of the dying process do not alarm the family just keep the patient comfortable. It is appropriate to call the hospice nurse if the fever is over 102. Skin care for the dying patient includes keeping the bed linens and patient clean and dry, straightening wrinkles and creases from the bed linens and changing positions prn. Be aware if the patient is in pain to have the family give the patient pain medicine before turning. If the patient is comfortable do not worry about turning him every two hours if he is clean and dry. Use pillows to support the patient and apply lotion using a gentle massaging motion, do not rub skin that is very fragile
Breathing Changes- The patient may have rapid breathing, slow breathing or periods of NO breathing called APNEA. He may alternate with periods irregular breathing and periods APNEA, this is called Cheyne-Stokes breathing. Elevating the head of the bed may help. The periods of APNEA will increase as the patient is closer to death. Support the family and do not alarm them, they may want to call hospice for support.
Oral care- If the patient is alert you may use a soft toothbrush and toothpaste as long as the patient can swish and spit out toothpaste and water. If the patient is no longer able to do this you can use toothette or lemon swabs to clean the mouth, do not place the swabs at the back of the tongue or mouth as it may cause gagging. Check the mouth for sores or redness and remove false teeth if they are uncomfortable or rubbing against sores in the mouth. The hospice nurse can order medication that can be swabbed in the mouth for a sore mouth. If the patient is dehydrated and the mouth is dry or cracked you can wash and hydrate the mouth with damp gauze sponges and use a lip moisturizer on the lips. If the patient is alert, raise the head of the bed and offer small amount of ice chips, stay by the bedside while the patient has fluid or ice in their mouth.
Dry eyes- Often a patient who is very lethargic or semi comatose will be asleep with his eyes open causing very dry eyes. Take gauze sponges or washcloths and wet them with warm water and cover the eyes and leave them soak for 10 -20 minutes if tolerated by the patient, repeat this process every few hours as needed. Always explain to the family and patient what you are doing so as not to alarm them. Remember the hearing is present until death so always tell the patient what you are doing, NEVER assume they are unaware of their surroundings. DO not tell the family that the patient is dehydrated just say the eyes are dry and you want to moisten them.
Time of death- If you are alone with a patient and think death is near call the hospice nurse and let her know, the family should also be called by you or hospice so they can be near the patient as they are dying. This call should be made by the hospice staff whenever possible. If the family is home you should let them know that death MAY be near so they can call who they need to and they also may want to call hospice. When the patient dies straighten the bed linens so the patient looks his best and allow the family time to grieve at the bedside, be sure someone has called the hospice nurse.