Hospice Patients Alliance: Consumer Advocacy


There are many challenges to come in caring for your loved one. Mobilizing all the assistance you can get will be very important in helping you provide the very best care possible. There will be times when it will be difficult for you to get an opportunity to sleep, when important decisions will need to be made, when you will be physically, emotionally and mentally exhausted. Learning how to care for your loved one without straining is important. To help you care for your loved one, the following topics will be discussed below:

  • Making Arrangements for Assistance

  • Scheduling Helpers

  • Positioning the Bed

  • Raising & Lowering the Ends of the Bed

  • Siderails & Safety

  • Terminal Agitation

  • Using a Regular Bed

  • Keep Linens Flat & Smooth

  • Need to Reposition Patient Up in Bed

  • Need to Avoid Dragging

  • Drawsheets Used to Lift or Turn

  • Turning Your Loved One

  • Changing the Sheets

  • Dealing with Urinary Incontinence

  • Dealing with Bowel Incontinence

  • After Death Care

Making arrangements for Assistance

: If you have even a few friends or family members who are willing to help out, you could make out a list of people willing to help out around-the-clock, when it becomes necessary. Of course, because of the intimate nature of bedside care, any person helping would have to be acceptable to your loved one. A friend or relative who is a nurse would be able to demonstrate how to provide bedside care. The RN case manager from the hospice will also show you what needs to be done. When a person is unable to get up out of bed, or even turn in bed by themselves, they are dependent on the caregiver for their needs. Hospice care is directed toward meeting the needs of the terminally ill. You will be an important part of the overall team that helps to keep your loved one comfortable and helps to meet his or her needs.

Scheduling Helpers: Being organized in making schedules for help will help relieve you of bearing the full responsibility for care. Even with hospice services, there will be many times when you will need to be at the bedside assisting your loved one. Of course, if there is an actual crisis in symptoms out of control, then the hospice will provide additional continuous nursing care. Learning how to provide the care needed without straining your back or otherwise injuring yourself is so important.

The hospice's RN case manager assigned to you will be most helpful in providing you with the information you need to provide care for your loved one. You will be able to pick up many helpful insights into bedside care by observing the hospice nursing staff when they are in your home. You can ask them to show you how to care for your loved one.

Positioning the Bed: Because you will be caring for your loved one when he becomes unable to move or turn on his own, the bed must be positioned so that you can walk along both sides of the bed and reach him from either side. Trying to work from only one side is not practical, may cause you to strain your back, and will make bedside care extremely difficult.

Raising or Lowering the Ends of the Bed: It is helpful to have a hospital bed for patient care, when patients' strength declines and they are unable to get up on their own. Hospital beds have mechanisms to raise or lower both the head or foot of the bed, which makes patient comfort easier to maintain. It is common for many patients to resist the idea of using a hospital bed, feeling that allowing a hospital bed into the home is equivalent to admitting defeat, that death is approaching. However, the reality is that death is approaching, and patient comfort is the goal now. When patients have congestive heart failure or respiratory disease, a hospital bed's ability to raise the head of the bed up will greatly help the patient to breathe more easily.

Siderails and Safety: Hospital beds also have siderails which can help prevent the patient from falling out of bed. They serve to physically hold the patient back in bed if they roll over the side and also remind the patient about the edge of the bed. These are extremely important to have if the patient is confused or may become confused in the future. It may be necessary to have someone sitting with your loved one 24 hours a day if he or she becomes seriously confused or agitated. When a patient is very confused, she may attempt to get up out of bed independently, even though she's too weak to stand on her own and would fall down.

Terminal Agitation: Many patients (although not all) may become quite restless or even agitated as they approach nearer to death. Even if your loved one is normally quite calm and peaceful, how he acts at this time may change dramatically and drastically. Some patients become quite anxious and seemingly nothing you do can help them calm down. This type of agitation is called terminal restlessness and is a major symptom which needs to be controlled for your loved one's safety and well-being. Experienced hospice nurses know that such a patient, if left alone for even a moment, may get up out of bed and fall or injure himself. Some patients have been known to crawl right over or in between the siderails of a hospital bed, and then fall! The attending physician will order medications which will help to calm your loved one down and relieve the agitation.

Using a Regular Bed: If your loved one refuses to use hospital bed, it is possible to place cushions (such as might be used in couches) under the mattress to raise the head of the bed up and help the patient breathe more comfortably. Placing pillows on top of the bed is not as effective or easy to use. Siderails may be purchased at some department stores which can be secured in place by placing a part under the mattress. Keep Linens Flat and Smooth: Keeping the bottom bed sheets flat and smooth will help your loved one to be comfortable. Wrinkles in the bed or any debris will irritate the skin and cause discomfort as well as injury to the skin. While it is not easy to completely straighten out the linens when the patient is in the bed, you can snug up the sheets on one side, then roll the patient on top of the smooth sheets, and then smooth out the other side. Also remember to leave the top sheet loose enough so that it does not press down on his feet or feel uncomfortable. Some patients become so sensitive that they cannot tolerate anything at all laying on top of their feet, even a sheet!

Need to Reposition Patient Up in Bed: As your loved one weakens, he will be unable to reposition himself in bed for comfort. Even though unable to reposition himself, many patients tend to move down toward the foot of the bed over time, requiring regular assistance to get back up toward the head of the bed. If assistance is not provided, the patient remains slumped down too far toward the foot of the bed and will not only feel uncomfortable, the position can interfere with ease in breathing and also cause unnecessary pressure on the base of the spine (coccyx) and result in skin breakdown.

Need to Avoid Dragging: When your loved one experiences difficulty turning himself or pulling himself up in bed, pulling or pushing him without lifting will result in dragging his body across the bed. Dragging him from side to side or up in bed can cause injury to the skin, so it should be avoided. Any time you wish to turn or move him, the bed should be flat, if this is possible. If you have a hospital bed, the electric or manual controls will allow you to lower the head of bed briefly while this task is performed.

Drawsheets used to lift or turn your loved one: When moving a patient in bed, it is quite useful to place folded sheets across the bed linens with your loved one on top. Then when it becomes necessary to help move your loved one, you and another person can pull and lift this draw sheet to turn or move him in bed. This helps to avoid dragging him across the bed. Pulling on the patient's arms to position him should be avoided. The sheet should be folded so that the distance from the shoulders to the knees is lifted when using the draw sheet. How to use a draw sheet is something your nurse can demonstrate for you.

Turning from Side to Side: In hospitals, it is the standard to turn or roll a patient in bed every two hours, so that skin breakdown and bedsores do not occur. If your loved one is unable to move on his own, you will need to turn him on a regular basis. Using a drawsheet is helpful for turning as well as pulling your loved one up in bed. Your RN case manager will be able to advise you as to how often turning is necessary in your situation.

When you assist your loved one to lay on his side in bed, you can use a rolled blanket or a pillow tucked against his back to help keep him on his side, otherwise he may roll back over onto his back. Placing a pillow between the knees and ankles can help make your loved one more comfortable as well.

In some cases, at the very end, it will not be appropriate to turn your loved one in bed, because this could be more disturbing or painful at this time. There is no need to be concerned about bedsores if the patient is actively dying at the very end. Maintaining comfort is most important. Whatever is done should be based upon your loved one's comfort.

Changing the Sheets: When your loved one becomes bedbound and can't reposition himself, it will be more difficult to change the sheets. But changing the sheets on a regular basis is important and can help him to be more comfortable; keeping clean and dry are part of patient comfort. The way to change sheets with the patient in bed is to get the patient over toward one half of the bed, then pull the sheets out on one side and tuck them under the patient, place clean sheets on the unoccupied side of the bed with the excess tucked against the patient, roll the patient back onto the clean sheets and pull out the old sheets and pull the clean sheets all the way out and make the bed, tucking the ends under the mattress. With a little patience and nursing technique, the job can be done without too much difficulty!

Dealing With Urinary Incontinence: Part of the transition from this life to the next is a decreasing focus on the concerns of this world. All terminally ill persons will eventually lose control of their bladder, either at the actual point of death or before, because of disease or loss of consciousness. This can be extremely depressing and humiliating to your loved one. Maintaining privacy for your loved one is extremely important when providing intimate care.

Before a patient becomes totally incontinent, a bedpan may be offered for a woman or a girl who cannot get up to the bathroom or a bedside commode, and a urinal may be placed for a man or boy's use. Making sure the bedpan or urinal is available on a regular basis is very effective in maintaining continence when your loved one is still conscious and able to void at will. You should offer the bedpan or urinal regularly so that he or she doesn't need to ask you for it in front of others. Telling visitors that you need a little privacy for a few moments is perfectly acceptable and preferable to letting your loved one be incontinent because a bedpan or urinal was not available soon enough to be used. It is ok for you to take charge and maintain your loved one's privacy as needed.

If incontinence of urine is occurring on a regular basis, you will need to place incontinent pads underneath your loved one. These can be reusable and washable (made of cloth) or disposable. You will also need to place incontinent briefs to absorb urine and help keep the skin dry. These will need to be changed every few hours as needed, after washing. Changing of incontinent briefs can be done by:


  • turning the patient on his side,

  • tucking the visible portion of the brief under him,

  • washing up that area exposed,

  • tucking a folded half of a new brief next to the old one and laying out the other half under the patient,

  • then turning the patient back onto the other side,

  • pulling the old brief out along with the new one and washing the area exposed and then securing the new brief in place.

Skin that becomes irritated or reddened should be cleansed, patted dry (not rubbed) with a soft towel, and a moisture barrier may be applied. Your RN Case manager will explain how to deal with irritated skin.

Dealing with Bowel Incontinence: While bowel incontinence may be a result of loss of consciousness or disease, it may be a result of loose bowel movements or diarrhea caused by side-effects from medications or other causes. It is important to make sure the RN case manager is closely monitoring all medications being given to make sure they are properly adjusted. Laxatives can be overused in some cases and must be closely evaluated. Offering the bedpan on a regular basis can help avoid incontinence if your loved one is able to control this function at this time.

As in the case of urinary incontinence, incontinent pads and briefs will need to be placed to prevent soiling of the bed and to help keep the patient clean and dry. After removing any bowel movement with toilet paper, a wet soft cloth or disposable wet wipe should be used to remove any remaining soiling and to assure complete cleanliness. If bowel movement soiling hair in this area is difficult to remove, an effective way of cleaning up is to apply shaving cream and then wipe with soft damp cloths.

Some patients may be so embarrassed and humiliated by bowel incontinence that they refuse to eat, drink or take any laxatives necessary to avoid constipation related to taking pain medications. In these cases, constipation may become so severe that the patient suffers from extreme abdominal pain, cramping and bowel obstruction and may die from the bowel impaction, which is in itself a life-threatening condition. For this reason, it is important to communicate your love and understanding for your loved one, maintaining privacy, providing adequate time for bowel functions, and to listen to your loved one's concerns.

After death care: For many family members, even thinking about death or after death issues is virtually impossible, ...something to be avoided at any cost. However, your loved one may have definite wishes about the funeral, after death care and other arrangements. Different religions have certain restrictions about after death care which must be respected. It is important to find out if your loved one has specific requests about after death care and arrangements.

After death occurs, the hospice nurse will either assist you with after death care or perform this care by herself. Your loved one's body may need cleansing due to urinary and bowel incontinence. Clothing may need to be changed if soiled. The body should be placed in a suitable position for viewing, with legs straight and head of bed lowered down flat. If rings or other jewelry are to be given to others after death occurs, they should be removed after family and close friends have an opportunity to say goodbye.

Depending on the religious beliefs and wishes of your loved one, the minister, priest, or rabbi may be called to perform prayers with the family present. In other religious traditions, no special prayer is performed after death, but is to be performed before death occurs. All of these issues need to be addressed long before death occurs.

It is quite common for families and close friends to wish to visit at the scene of death right after death occurs. It is a very intimate time for final goodbyes to be said. This is one reason why it is so important to allow all family members and close friends an opportunity to say goodbye.

The hospice nurse, chaplain or social worker may assist you in calling the funeral home. When the representative from the funeral home comes out to the home, he will ask for the exact time of death, name of the attending physician, date of birth, and other information. It is helpful to make decisions about funeral arrangements prior to the time of death if at all possible, because after death it is an extremely emotional time, and making such decisions at that time can cause even more emotional upset. It is also helpful to make decisions prior to death, because your loved one would have an opportunity to express his wishes.

If you have questions about hospice, we hope that you will take the time to visit the hundreds of pages at our website, read our Guide to Hospice Care and visit our resources and links section (with hundreds of vital resources listed).

Hospice Patients Alliance affirms that all human life is inherently valuable and that the role of hospice nurses, physicians and all other staff is to alleviate suffering and provide comfort for the sick and dying without sanctioning or assisting their suicide. A death with dignity allows for a natural death in its own time, while doing everything possible to assure relief from distressing symptoms. Hospice Patients Alliance works hard to promote quality hospice care throughout the USA. If you would like to support our mission, we hope you wille consider supporting our mission through a donation. Hospice Patients Alliance is a 501(c)(3) charitable nonprofit corporation and your donations are deductible to the full extent allowed by law.

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