Care During the Final Days

If treatment is no longer able to slow or halt the growth of cancer, the disease progresses to what is referred to as advanced or end stage cancer. Treatment for end stage cancer focuses on keeping the patient comfortable and free of pain as he or she approaches the end of life. It is important to know that care will continue right up until the end of life, and that everything possible will be done to ensure that death will be peaceful and dignified.

Choices for care

Even if a cure or long-term remission is no longer possible, there are still choices for care. Some people decide to stop disease-modifying therapy, such as chemotherapy, and instead focus on treatment of symptoms. Palliative care focuses on relieving symptoms and pain to help maintain as high a quality of life as possible throughout the course of cancer. Others choose to investigate additional medical options and to continue receiving both palliative care and anticancer therapy. For some, participation in clinical trials testing novel treatments feels like the "right" choice. Just as there are many choices throughout life, there are also many important decisions that need to be made as someone approaches the end of a long illness.

Many people with end stage cancer decide to enter hospice care. Hospice care focuses on and can be offered to those who expect to live six months or less. The reason for this six-month time frame has to do only with reimbursement for services as care is usually continuous—without obvious mile markers—throughout the course of the disease. Referral to hospice requires that the person with cancer and his or her doctor have an open, honest conversation about treatment options and prognosis (chance of recovery). The emphasis of hospice care is on relieving pain and discomfort and on helping the patient and family cope with the emotional impact of death and dying. Most hospice care (80%) takes place in the patient's home, but hospice care is also available in hospitals and private hospice and nursing home facilities. Because of the availability of hospice programs and other home care services, people with end stage cancer can often choose where they would like to spend their last days, whether at home, in a hospital, or in a private facility. Choices need to take into consideration the cost, availability of caregivers, and community resources.

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 with end stage cancer will live, there are some common signs and symptoms that indicate a person is entering the final weeks and days of life. Knowing what to expect helps both patients and caregivers feel less afraid and also helps ensure that loved ones can be together when death occurs. If the patient is under hospice care, the hospice staff will talk to the patient and family about what to expect. If the patient is in a hospital or other facility, you may wish to ask a doctor or a nurse to explain what to expect as death approaches. For many patients and families, having access to 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 essential 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 "well" parent.

The following signs indicate that a person with cancer is entering the final weeks of life as his or her body's systems begin to shut down. Not everyone will experience the same set of signs and symptoms, nor will the following occur in a 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 special people to visit, or may need visiting time to be limited

The following characteristics are common during the final days of life:

Breathing becomes slower, sometimes with very long pauses between breaths
Congestion with gurgling or rattling sounds when breathing as the patient becomes unable to clear thick secretions from the chest
Skin becomes cool, especially the hands and feet, and may turn a bluish color
Dry mouth and dry or cracked lips
Decreased amount of urine and 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, possibly entering a coma

Providing comfort

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

Use an eggshell mattress or foam cushions to make beds and chairs more comfortable. Help the patient change positions frequently and change bedsheets at least twice a week or more frequently, as necessary.
As much as possible, elevate the patient's head, or turn the patient on to his or her side, to help make breathing easier.
Use blankets to help keep the patient warm. Do not use electric blankets as they can cause burns. Gently rub the patient'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 patient of time, place, and who is there with him or her. Although, it's important to note, even speaking clearly may not help in cases of terminal delirium (mental confusion).
If the patient 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 patient is one of the best ways to give comfort and reassurance. In some cultures, just being with a loved one is all that is needed so he or she does not feel alone.

Controlling pain

Controlling pain is a crucial part of dying comfortably and peacefully. Uncontrolled pain can cause other symptoms to worsen, such as fatigue and confusion, and can make it more difficult to concentrate on time spent with loved ones. As cancer progresses, pain can worsen and become more difficult to control. However, no one should expect to have to tolerate significant pain, and a variety of pain control measures can be used. Doctors who specialize in pain management and palliative care can help manage pain that is difficult to control.

Multiple, effective means of pain control are available and clinicians are skilled at administering relief for patients. Clinicians, however, need to know from both patients and family members what pain is being experienced and what the outcome is for various interventions. Particularly when working with diverse cultural groups, communication of the pain experience will vary, and each person must be aware of the different levels of ability to understand the needs of the other. Cross-cultural communication skills are important in enabling doctors, nurses, clergy, and other staff to coach patients and family members on how to communicate their needs and to ask for assistance when necessary.

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 alleviate
Inability to take the prescribed medications
Signs of distress (pain, breathing problems, agitation)
Change in the level of consciousness
Situations that overwhelm the caregivers at home

If the patient is acting in ways you don't understand or showing behavior that you feel unsure how to manage, it's important to call for help.

Respecting final wishes

Many people with end stage 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 make those decisions. In many cases, advance directives limit the use of artificial life support, such as mechanical respirators or a feeding tube, and may include a do not resuscitate (DNR) order stating that the patient not be revived if his or her breathing or heartbeat stop.Loved ones and caregivers may not always agree with the decisions outlined in an advance directive. However, having their final wishes respected and followed is an important need for people who are terminally ill. As a caregiver, following the final wishes of your loved one is one of the most important things you can do to help him or her die with dignity and peace of mind. For more information on advance directives, read the Cancer.Net Feature: Understanding Advance Directives.

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 stop. Emergency personnel responding to a 911 call will perform cardiopulmonary resuscitation (CPR), even if a DNR order exists. Read more about DNR/CPR.

Organizing practical matters

Organizing practical matters ahead of time can reduce some of the stress of caregiving and help caregivers concentrate on spending time with their loved one. The following are some practical tips that may help you organize your time and focus your efforts on your loved one:

Make a list of people your loved one 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 should be at the bedside.
Make a list of phone numbers of people to call after death occurs and enlist the help of a friend or relative to 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 circumstances of the expected death.
Notify hospital or hospice staff of cultural and/or religious mourning customs. 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 patient's wishes and that cultural practices will be followed.

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, an element of shock and disbelief is common. Hospice staff or the patient'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.

Additional resources

Lance Armstrong Foundation: What Hospice Care Means for Caregivers

National Cancer Institute (NCI): Advanced Cancer: Living Each Day and Cancer Facts: End-of-Life Care: Questions and Answers

National Coalition for Cancer Survivorship: End-of-Life Issues and Caregiving: The Basics

American College of Physicians: Home Care Guide for Advanced Cancer

Hospice Net: Preparing for Approaching Death

AARP: Grief and Loss

More Information

End-of-Life Care

Caregiving

Grief and Loss

Preparation at the End of Life

Patient Care at the End of Life Chat Transcript