Now it is my turn, my pleasure and my commitment to be there for her and with her, whatever it takes.

Sunday, January 15, 2012

Care During the Final Days

As a person nears the end of life, it is often difficult to know what to expect. If the person with cancer is being cared for at home, there may be additional responsibilities for the caregivers than if a person is being cared for in a hospital or hospice facility. Regardless of the situation, it is important to know that the health care team will continue to provide the best care possible until the end of life, and that everything possible will be done to ensure that death will be peaceful and dignified.

Signs of approaching death

Death from cancer usually occurs after a person has gradually become weaker and more tired over several weeks or months. Although it is not always possible to predict how long someone will live, some common signs and symptoms show that a person is entering the final weeks and days of life. Knowing what to expect helps both the person and the caregivers feel less afraid and helps ensure that loved ones can be together when death occurs. If the person is receiving hospice care, the hospice staff will talk with the person with cancer and the family about what to expect. If the person is in a hospital or other facility, ask a doctor or a nurse to explain what to expect as death approaches. For many people and families, knowing this information serves to relieve anxiety and allows for better planning. In the case of a parent (of young children, especially) who is dying, it is important to allow time to prepare children for upcoming events and ensure they are well taken care of at a time of increased stress and demands on the other parent.

The following signs show that a person with cancer is entering the final weeks of life. Not everyone will experience the same set of signs and symptoms, nor will the following occur in any specific sequence:

Progressive weakness and exhaustion

Needing to sleep much of the time, often spending most of the day in bed or resting

Weight loss and muscle wasting

Loss of appetite and difficulty eating or swallowing fluids

Decreased ability to talk and to concentrate

Loss of interest in things that were previously important

Loss of interest in the outside world and wanting only a few people nearby; the person with cancer may want only a few visitors or may need to limit the time spent with visitors.
The following signs and symptoms are common during the final days of life:

A slowing of breathing, sometimes with very long pauses between breaths

Congestion when breathing with gurgling or rattling sounds as the person becomes unable to clear secretions from the throat

Cool skin, especially the hands and feet, that may turn a bluish color

Dry mouth and dry or cracked lips

Decreased amount of urine

Incontinence (loss of bladder and bowel control)

Physical restlessness or repetitive, involuntary movements

Disorientation and confusion about time, place, and identity of people, including family and close friends

Hallucinations (seeing or hearing things that are not there). These are normal and are not a cause for concern unless they scare or upset the person with cancer.

Drifting in and out of consciousness and possibly entering a coma
Providing comfort

As a family member or caregiver, there are things you can do to help make the person more comfortable as death approaches. If he or she is receiving hospice care, the hospice staff will show you how to provide general care and comfort measures. If the person is in a hospital or other facility, ask the staff how family members can be involved in caregiving. Some general guidelines for providing comfort are listed below. Each family is encouraged to form a plan with the health care team that best matches the person's needs.

Use an eggshell mattress or foam cushions to make beds and chairs more comfortable. Help the person change positions frequently and change bedsheets at least twice a week or more often, as necessary.

As much as possible, elevate the person's head or turn the person on to his or her side to help make breathing easier.

Use blankets to help keep the person warm. Do not use electric blankets as they can cause burns. Gently rub the person's hands and feet, or soak the hands and feet in warm water.

To ease confusion and disorientation, speak in a clear, calm voice and remind the person of the time, place, and who is there with him or her. However, sometimes speaking clearly may not help when there is delirium (mental confusion).

If the person can swallow, offer sips of liquid through a straw or from a spoon to help keep the mouth moist. Glycerin swabs and lip balm also help with dry mouth and lips.

A gentle massage can be comforting and can help with blood circulation and dry skin. Use a lotion without alcohol, which tends to further dry the skin.

Just sitting with and talking to, gently touching, or holding hands with the person is one of the best ways to give comfort and reassurance. Often, just being with a loved one is all that is needed so he or she does not feel alone.

Controlling pain

Controlling pain is an important part of dying comfortably and peacefully. Uncontrolled pain often causes other symptoms to worsen, such as fatigue and confusion, and may make it more difficult to concentrate on time spent with family and others who care about the person. As cancer develops to an advanced stage, pain can worsen and become more difficult to control. However, no one should expect to have to tolerate significant pain. Doctors who specialize in pain management and palliative care specialists can help manage pain that is difficult to control using a variety of measures.

The doctor and the health care team need to know what type of pain is felt and what methods have and have not worked to control the pain. Some people may talk more openly about pain than others, but it is important for the person with cancer or a family member to talk regularly with the doctor and the health care team about any pain so that the needs of the person are met. Read more about managing and treating cancer pain.

When to call for help

If you are caring at home for someone with cancer, ask the hospice or home care staff for guidance on when and whom to call for help. The following are some situations that require assistance from a trained professional:

Pain that is difficult to manage or relieve

Inability to take the prescribed medications

Signs of distress (pain, breathing problems, agitation)

A sudden change in the level of consciousness or a seizure

Situations that overwhelm the caregivers at home
If the person is acting in ways you do not understand or showing behavior that you feel unsure how to manage, it is important to call for help.

Respecting final wishes

Many people with advanced cancer choose to prepare advance directives. An advance directive is a legally binding set of instructions that explains the kind of medical treatment a person wants and does not want if he or she is no longer able to speak for himself or herself. For example, some people nearing the end of life choose to not receive artificial life support, such as mechanical respirators or a feeding tube, and may request a do not resuscitate (DNR) order stating that the person not be revived if his or her breathing or heartbeat stops. Caregivers and others who care about the person may not always agree with the decisions outlined in an advance directive. However, having the person’s final wishes respected and followed is an important need for people with an advanced illness. As a caregiver, following the final wishes of the person you care for is one of the most important things you can do to help him or her die with dignity and peace of mind.

It is important to note that if someone has a DNR order, do not call 911 (or the emergency services number in your local area) if his or her breathing or heartbeat stops. Emergency personnel responding to a 911 call may perform cardiopulmonary resuscitation (CPR). Read more about DNR orders and CPR.

Organizing practical matters

Organizing practical matters ahead of time lowers some of the stress of caregiving and helps caregivers concentrate on spending time with the person they are caring for. The following are some practical tips that may help you organize your time and focus your efforts:

Make a list of people that the person you are caring for would like to have visit in the final weeks.

Although the moment of death cannot be planned, it is best to think about who should be present at or around the time of death. Decide whether a clergy member or other spiritual leader should be at the bedside and what rituals or ceremonies are important to perform.

Make a list of phone numbers of people to call after death occurs and ask a friend or relative to help make those calls.

Choose a funeral home and notify them that a death is expected in the near future. Most hospices will call the funeral home for you and inform them of the situation. Understand the person’s wishes for funeral and burial services, such as cremation.

Notify hospital or hospice staff of cultural and/or religious customs about grieving. This may include such things as a list of who should be present before and after the time of death, and any special customs surrounding washing, dressing, or caring for the body after death. Informing hospital or funeral home staff ahead of time can help ensure that they can accommodate the person's wishes and follow cultural practices.
Immediately after death

When death occurs, the person's muscles will relax, breathing will stop, the heart will stop beating, and there will be no pulse. Even when death is expected, shock and disbelief is common. Hospice staff or the person's doctor should be notified within a few hours, but a natural death is not an emergency and medical personnel do not need to be called immediately. Many people find it comforting to take some time to sit with their loved one, perhaps talking quietly, just holding hands, or seeing their loved one at peace.

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