Towards the End of Life: What You and Your Family Can Expect
This booklet is for patients with advanced cancer who are moving towards the end of their lives. It is also for the people who care for and love them. You and your family may be wondering what lies ahead. We cannot tell you exactly, because patients have different symptoms and different needs at the end of life. This booklet will help you understand some of the symptoms you may experience towards the end of life and the options you have available to you.
At Memorial Sloan Kettering Cancer Center (MSKCC) we want to make sure you understand your treatment options. By understanding your options you can make informed decisions about your care at the end of life. New York State has a new law that supports us in this effort. It is called the Palliative Care Information Act (2010). This law requires doctors and nurse practitioners to discuss the options with patients with a terminal illness. A terminal illness is one which is expected to result in death within six months. They must talk about the prognosis, treatment options, including the risks and benefits, and pain relief. Some patients are not able to make their own decisions about these things. The law requires us to give this information to a person with authority to make decisions for them. This is usually the person assigned by the patient on the Health Care Proxy form. Your physician or nurse practitioner may not wish to talk with you about your care end of life options. In that case, he or she must arrange for another physician or nurse practitioner to do so.
Palliative care is an approach to caring for patients and their families. Palliative care specialists are healthcare professionals who are expert in helping people optimize their quality of life when they are facing life-threatening or debilitating illnesses. Unlike hospice care, which is for people at the end of life, palliative care is provided as part of acute care, along with chemotherapy and other treatments.
Your primary cancer doctor can often provide palliative care during this time, but sometimes patients need more specialized palliative care. In this case, your primary doctor may call on the Memorial Sloan Kettering's Palliative Medicine Service. The doctors, nurses and nurse practitioners from this service will work closely with your cancer doctors to make you comfortable.
At some point you and your doctor may decide that the goal of your care can longer be to cure your cancer. Instead the goal is to relieve your symptoms. With the focus moved from cure to comfort, you and your family can concentrate on the quality of the time you have left. You might live for days, weeks, or many months. Palliative care aims to help you make the most of this time.
Hospice care delivers palliative care to patients only at the end of life. The goals of hospice are:
to help people live comfortably during the end stage of their life
to help them to have a peaceful death
You might consider hospice care if your cancer no longer responds to treatment. You might also consider it if the burden of treatment is greater than its benefit. This is your decision. Your doctor may discuss hospice care with you and your family because it might be the care that best meets your needs at this time.
Hospice care is delivered by a team of professionals. A doctor is in charge of your care plan. Nurses are involved in your day-to-day care. You can receive help with physical needs, meals, and light housekeeping. A chaplain, social worker, and physical therapist can see you as needed. Hospice care may also include volunteers who can spend time with you. You can get this care:
In an assisted-living facility
In a nursing home
In a long-term care facility
In a hospital whose sole goal is to provide palliative care for cancer patients
For most patients, hospice care includes ongoing symptom management. All care is supervised by a hospice doctor and nurse. Hospice care may be paid for by Medicare, Medicaid, or private health insurance. Policies vary though; check with your insurer. Medicines for symptom control are covered as part of your care. If you are an inpatient, the care is 24 hours a day.
In general, hospice care in the home does not provide 24-hour nursing care. The hospice team helps your family to care for you. A nurse is on call 24-hours a day to help with any problems and to advise you or your family over the phone. A home health aide is usually provided for a certain number of hours several days per week. If you need additional help at home, you may have to pay for it. If you go on hospice care, the hospice nurse will tell you what the hospice service can and cannot provide. Ask your case manager about hospice care in your area.
Many other specialists are important in making end-of-life care as peaceful and meaningful as possible.
Social workers provide emotional support and counseling. You and your family may need to make decisions on end-of life care. These can be hard. You can call on the social worker to assist you as you think about what you want.
Your social worker can also:
assist with emotional support around issues such as change and loss
strengthen your and your family's coping skills
identify specific concerns that you or your family have
prepare and support you and your family for your death
help your family and members of the care team communicate
provide referrals to bereavement or support groups or community resources
counsel family members including children
Case managers are registered nurses. They assist you and your family with discharge planning. They can:
arrange for services such as home care, home hospice, or placement in a care facility as needed
arrange for nursing visits, physical therapy, and social worker visits if these are needed
arrange for medical equipment if needed
help you find out what will and will not be covered by insurance
They can work with you on the inpatient units and in the clinics. When you are in the hospital, they work closely with your health care team. The case manager will help you find a home care agency.
Spiritual and religious concerns may arise as death draws near. You may be religious. You may be spiritual, but not religious. In either case, you may find it helpful if someone supports your beliefs. Spiritual needs at the end of life may include, but are not limited to:
talking about the value and worth of your life in sacred terms
taking part in prayer or ritual
hearing scripture or familiar sacred texts
finding comfort and grounding in sacred stories
seeking forgiveness, confessing grievances
connecting to faith communities
Chaplains can offer prayer or a ritual or simply provide a comforting presence.
Our chaplains are able to assess your needs as you and your family face your death. They can walk the journey with you as a companion if you wish. Clergy from the community are also available for many religious traditions. We can arrange to have a clergy person from your faith visit at your request.
Our chapel is off the main lobby. It is open day and night for prayer, meditation, or quiet contemplation. All are welcome.
Chaplains can be reached by calling (212) 639-5982. The Chaplaincy Service Department is in room C-170.
Our Integrative Medicine Service offers complementary therapies. These comfort patients and families alike. They are non-invasive, reduce stress, and help control distress.
Pain, nausea, fatigue, anxiety, depression, and poor sleep are the most common complaints. Many of our therapies can help control these and other symptoms. The Integrative Medicine Service will guide you and your family to the most appropriate and effective therapies. Among others, we offer massage, relaxation techniques, acupuncture, and hypnosis. In some cases, we teach family members to do light touch to sooth their loved one, or to learn guided imagery techniques. For a complete listing, please visit our web page at www.mskcc.org/cancer-care/integrative-medicine.
Treatments are free for MSKCC inpatients. For MSKCC outpatients, or for family or friends, there is a charge. Check with your insurance company to see if they reimburse for treatments. If you are an inpatient, call (212) 639-4947. Inpatient treatments are done at the bedside. If you are an outpatient, call (212) 639-4700. Outpatient treatments are offered at 1429 1st Avenue at East 74th Street.
Many people want to remain in control no matter how sick they are. If you appoint a health care agent, you can make sure that your wishes are respected. If you have not appointed a health care agent, ask for the card What You Need to Know about a Health Care Agent and the booklet Health Care Decisions: Protect Yourself —Plan Ahead. It is possible that a time may come when you can no longer speak for yourself. In that case, you might want someone who knows your wishes to speak for you. That is what a health care agent can do.
Coping Better: Talk Openly
Coping with worsening cancer is difficult.
As you become more dependent, your family and friends must work together to help you. If you and your family talk openly about death and dying, you are all likely to feel better. Not talking about what is happening simply avoids the subject. This is ultimately harmful. This sense of false hope — that everything will be all right — can seem hollow to the patient. The longer this goes on, the less time everyone has to say the things that matter.
Talking openly about death and dying also helps you and your family and friends to plan. If you can help loved ones to prepare for your death, this is of great benefit. Practical guidance may involve many areas. You can provide directions for burial and mourning. You can help with financial matters and delegate responsibilities. You can also give advice about how to move ahead with life.
Moving ahead with life is an important task for your loved ones. Many patients think about it carefully. Family and friends may remember things that are said during this time forever. Words that strengthen may guide family and friends on their journey through life. They will also lean on this strength when they themselves face the possibility of death.
Depression and Anxiety: They Are Treatable
Even though the time leading to death can be very difficult, most people cope well. Feeling sad is normal, but depression is not. If you feel depressed for much of the day, let your doctor or nurse know. Depression can and should be treated. There are two main ways of treating depression and anxiety. One is talk therapy. The other is medication. Often these two approaches are used together. You must let your health care team know how you feel so they can help you.
Advanced cancer can cause many problems that can affect eating. In the final weeks of life, our goal is to keep you comfortable. Symptoms you may have include:
decreased desire for food
feeling full after only a few bites of food
bloating or gas
nausea or vomiting
fatigue and weakness
There is no rule on what foods you should be eating. Eat the foods that appeal to you most. If you were on a restricted diet before (e.g. diabetic diet), your doctor, nurse or dietitian may tell you to follow a less restrictive or regular diet. That might give you more choices to enjoy your food and let you eat more. It is normal to eat and drink less and less as you get closer to death and your body slows down.
Dry mouth may be a problem at this time. Some medicines you might be taking can make it worse. You may find soft, moist foods and fluids most soothing. Try:
honeydew, cantaloupe, watermelon, or other fruits with high moisture content
cottage cheese and fruit
ice cream, sherbet, popsicles
macaroni and cheese
meat loaf with gravy
mashed potatoes with gravy
nutritional supplements or homemade milkshakes
Small, frequent meals are usually best. Large meals may be too filling or overwhelming. Place reduced portions of food on salad plates or saucers. That can make them more appealing. Try small nibbles of food or sips of liquids throughout the day. Keep your favorite foods on hand.
Your family may encourage you to eat more. They may not have adjusted to the advanced stage of your cancer. At this point, food should be a source of enjoyment. You are no longer eating for calories and protein. Even if you eat well, you will not gain weight. That is the nature of cancer towards the end of life. When you no longer enjoy food, meals may be stressful. This should be a cue to your family to stop pressuring you. Show them this page.
In the final days, the body may not use food or fluids as usual. If they are continued, you may feel uncomfortable. It is normal to stop feeling thirsty and hungry. Many patients refuse food towards the end of life. This is a normal process as death approaches. Forcing food and fluid at this time can cause harm. Death is the result of advanced disease, not of starvation. Your family and friends may find it helpful to speak to a dietitian, your doctor, nurse, or social worker to help them understand what is going on.
If you cannot eat or drink much, you can become dehydrated. Symptoms of dehydration include dry mouth and skin, low urine output and dark, amber-colored urine. Keeping the mouth clean and moist with wet swabs, crushed ice, or small sips of water can increase your comfort.
You and your doctor will decide whether you should have intravenous fluids. For some, hydration is a religious requirement. In some instances, hydration may ease delirium. In other cases, dehydration has a soothing effect. At the end of life intravenous fluid may make you feel worse, not better. It can increase secretions in your lungs. You may then cough more or have the sensation of choking. Large amounts of fluid can make your arms and legs swell. This can make them feel heavy and make it hard for you to move. You and your doctor should talk about how you can get the right amount of fluid to keep you comfortable.
If you and your doctor decide that intravenous hydration at home would be helpful to you, you will need the help of a nursing service and a home infusion company. You will also need caregiver support. Your case manager will arrange this.
Let your doctor or nurse know if you are having any of the following symptoms. Early treatment makes them much easier to control. It will also make you more comfortable.
As death approaches, some patients become confused and agitated. When people are confused, what they say may have no real meaning. They may see things that are not there. Your family should remember that this is not who you are. This is from the disease and what is happening to your body. Sometimes confusion leads to feeling threatened. A confused person may accuse family members of stealing or doing other bad things. Again, this should not be taken on face value, as it is part of the illness. These symptoms should be treated aggressively. They can prevent a peaceful death.
Doctors treat confusion and agitation by addressing the underlying cause when possible. However, there may be many causes for these symptoms at the end of life. Whatever the cause, the symptoms must be treated. Usually this involves medicines that help to calm the person. The medicines may also help you think more clearly.
Things Your Family Can Do
Keep the room well lit during the day.
Place a clock close by so you can be aware of the time.
Place a calendar or clearly visible note that identifies the date - “Today is Thursday, January 1, 2011.”
Minimize noise levels in the room.
Continue to help you wear your hearing aids or glasses when possible.
Administer pain medicine.
Explain all actions before they are done - “I am going to turn you now.”
Make sure familiar objects are in the room.
Manage constipation by following the doctor's directions.
Promote relaxation and sleep.
Administer oxygen if ordered.
Administer medication to treat delirium.
Constipation is not having your usual number of bowel movements. You may not empty your bowel completely. You may have trouble passing hard stool. It can be an uncomfortable side effect of many medicines. The most common are those to treat pain, nausea, and depression, but other medicines can also cause it. It can also be caused by the disease itself as the tumor grows and affects different organs. Diet and decreased activity can make it worse.
Take over-the-counter medicines such as stool softeners and laxatives. You do not need a prescription. Docusate sodium (Colace®) is a stool softener and senna (Senekot®) is a laxative. Ask your doctor what to take and how much. If these do not work, tell your doctor or nurse. You may need a prescription for something stronger
Things you can do
Try to drink fluids if you can. Include water, juices, soups, and ice cream. Eat foods with fiber. Examples are fruits, vegetables, whole grains, and cereals containing fiber. As you get closer to the end of your life, changes in your diet will not be possible because you will be eating less. Don't force yourself to try to do what you cannot.
Diarrhea is watery bowel movements. At the end of life, both the disease and its treatment can cause diarrhea.
Ask your doctor if you can take over-the-counter medicine. Examples are:
Bismuth subsalicylate (Pepto Bismol® or Kaopectate®)
Things You Can Do
Increase the amount of fluid you drink if your doctor wants you to prevent dehydration from loss of water. Drink clear liquids such as apple juice, water, broth, and ices. Try sucking on ice pops. Keep your mouth moist with a small amount of ice chips if you cannot swallow. Keep your lips moistened with lip balm if you cannot drink.
Avoid milk and other dairy products. Do not eat foods that are irritating, such as spicy foods. Eat frequent, small meals whenever possible.
Products are available for adults who are active despite diarrhea. Adult incontinent pads can be used when you are in bed. You can find these products in your pharmacy and some grocery stores. They include:
It is important to change pads frequently to prevent skin breakdown. It is also important to keep the rectal area clean. Wash with gentle soap and water. Apply ointment after each diarrheal movement. Ointments you can use include:
You may have a feeling that your food is stuck in your throat. You may cough after swallowing. This can mean the food is getting into your lungs. This is called aspiration. It can cause pneumonia. These symptoms are more common in patients whose cancer is in the chest or neck. Tell your doctor or nurse if you have these symptoms.
Your doctor may tell you it is not safe to eat or drink at all. In that case, hydration by vein may be considered. (See “Hydration”)
Things You Can do
You may need only a change of diet. It includes chopping your food or pureeing it to make it easier to swallow. You might also use a thickening agent such as Thicken-Up® to make it safe for you to swallow.
Fatigue is a persistent sensation of tiredness or lack of energy. It is the most common symptom at the end of life. It can range from mild to severe. Patients often tell us they cannot walk even short distances. It is important to try to minimize fatigue because this symptom can worsen others such as depression, sadness, and feelings of loss. All of these are common at the end of life.
Pain often makes fatigue worse. Ignoring or trying to endure pain may cause stress and intensify fatigue. Do not wait until your pain level is high to take pain medicine. It is better to take it when pain is at a 3 or 4 level on a 0 to 10 scale. When you have less pain, you are likely to be more at peace. You may even be interested in other activities.
Medicines may help with fatigue. You can take these when you need them. You do not have to take them every day. Your doctor or nurse practitioner can prescribe them for you.
Anti-anxiety medicines or antidepressants may help you feel better overall. Ask your doctor if you should try them.
Sadness is the emotion that expresses loss. This emotion can affect fatigue. Discuss it with your family members and friends. Tell your doctor, nurse, social worker, or chaplain. If they understand how you are feeling, they can be of help.
Things You Can Do
Sitting up or getting out of bed may help to lessen fatigue if you have a hard time walking. However, try to walk short distances every day.
Reading, writing, or doing another activity may keep you involved. This can lessen your fatigue.
Fatigue is likely to affect your quality of sleep. It might help to take 20 or 30 minute naps during the day. Take them before 3:00 pm. That will lower the chance of your not sleeping at night.
Conserve your energy. Don't be afraid to ask for help with simple things such as bathing or even eating.
Nausea and Vomiting
Nausea and vomiting are symptoms that may occur at the end of life. Nausea may begin as an unpleasant wave-like feeling. It may or may not result in vomiting.
We can usually give you something to control nausea and vomiting. Many medicines can be prescribed in pill form or as a rectal suppository. Ask your doctor or nurse if you can have a prescription.
Things You Can Do
Do not attempt to eat until the symptom subsides. It may be helpful to drink fluids such as warm tea, which you may be able to tolerate.
Constipation can cause nausea and vomiting; try to prevent it.
Try to drink fluids, if you can. Ask your doctor how much fluid you should be drinking.
Walk if possible.
Take over-the-counter medicines to soften your stools if your doctor or nurse says it is okay.
If you feel that your pain medicine is causing your nausea and vomiting, let your doctor or nurse know. They may be able to change the medicine.
Eat small meals and avoid highly spicy foods. These may trigger nausea due to their smell.
Try room temperature or cold foods that are bland.
Consider trying other techniques such as acupuncture, relaxation, distraction, and hypnosis. You can do relaxation, distraction, and hypnosis in your home once you become familiar with them. Our Integrative Medicine Service can teach you some of these techniques.
Effective pain management is a big part of end of life care. Tell your doctor or nurse if you are having any new pain or if your pain gets worse.
Take your pain medicine by mouth as long as you can. If you have difficulty swallowing your pills, the medicine can be given in other ways. Some patients will receive radiation therapy to relieve bone pain. It can also be used to shrink a tumor that causes pain by pressing on nerves.
Things You Can Do
Talk to your doctor and nurse. Some people worry that taking a lot of pain medicine may cause addiction or hasten death. Let your doctor or nurse know if you have these concerns. Your doctors and nurses want to make you as comfortable as possible when you are dying. This includes aggressively controlling your pain.
Restlessness or Agitation
At the end of life some patients may be restless and agitated. This may be associated with pain or confusion. It may occur on its own. These symptoms can vary in intensity. Your doctor or nurse should always be notified. There may be many causes.
The main treatment is medicine. It can be given by mouth or under the tongue. It should be given around the clock. The goal is to keep you safe and calm.
Things Your Family Can Do
Place familiar objects around you.
Keep the room well lit and place a clock where you can see it.
Talk calmly and softly.
Minimize doing anything that makes you uncomfortable or fearful.
Reduce external stimulation such as loud television or radio if they interfere with your sleep.
Shortness of Breath (Dyspnea)
Shortness of breath is common at the end of life. It feels as if you cannot get enough air. It is most common in patients with lung cancer, but can occur in other cancers. There may be more than one cause of your shortness of breath.
Shortness of breath can vary in its severity. You may only become short of breath when climbing stairs or you may feel that way when at rest. Report this symptom to your doctor or nurse. It can be treated.
Treatment of shortness of breath depends on the underlying problem. Your doctor may remove fluid that is pressing on your lungs. You might need a blood transfusion. You may get medicine to relax the muscles in your airways. Oxygen will help some people. Your doctor or nurse will have many ways to improve this symptom.
Things You Can Do
There are a number of steps you can take to relieve your discomfort.
Plan for periods of rest between activities to help you catch your breath. If talking makes your breathing worse, shorten your time with visitors.
Find a comfortable position. Sitting up makes breathing easier. Try using a foam wedge or backrest when lying in bed. Sleeping or napping in a recliner may also make you feel more comfortable.
Open a window or use a fan to keep air moving in the room. This often makes people feel like they are getting more air.
In the winter, use a humidifier. People often breathe through their mouths when they feel short of breath. This causes dryness of the mouth. Humidifying the air may make you more comfortable. You may also benefit from drinking warm beverages or sucking on lozenges or hard candy.
Do any activity that helps you to calm down and relax. Try prayer, meditation, music, or relaxation exercises. These have all helped others. You can also combine them.
It is important to tell your doctor and nurse how effective the treatment is. If you are still feeling short of breath after one kind of treatment, there may be other steps they can take.
When Death is Near
At the end of life you will become more fatigued. You:
may remain in bed for longer periods during the day.
are likely to talk less and when you do it will be in a whisper.
may have little desire to eat or drink.
Your body temperature will become cooler. Breathing may become shallow. A sigh may be followed by a period of no breathing. This pattern may continue for some time, often hours. Your skin color may change and become paler or grayish. The circulation in your hands and feet will decrease and they may become cool to touch. During the last hours of life, you may not speak and may seem to be in a coma or sleeping. Nevertheless, you may still be able to hear voices.
In the last hours of life, you may develop a rattle in your breathing. This happens because saliva or fluids collect in the throat or upper airways. It may not make you uncomfortable, but it may worry family members.
Your doctor or nurse may order medicine to decrease the secretions.
Things Your Family Can Do
They can change your position to see if that stops it.
A serious illness in the family will affect the children. It does not matter how young or old they are. Your instinct may be to protect your child from the sadness and confusion that you are feeling. However, it is better to be honest about what is happening. Children should be told that this important person in their life is very sick and may die soon. What they understand will vary. Much depends on their age and maturity. All children will feel the pain in their own way. It might be helpful to let children take part in the end-of-life process. Telling your children the truth right now will help them know they can trust you. Spend some time answering their questions. Try to make it clear that if they have more questions later, you will answer them. If you are having trouble talking to your children, ask a family member or friend to help you. There are also counselors who can help you with this. Please call the MSKCC Department of Social Work at (212) 639-7020 and ask for a referral. You can also call the MSKCC Counseling Center at (646) 888-0100.
MSKCC's Kids Express Program publishes a brochure that will give you some tips on how to talk to your children about your cancer. Ask your nurse or social worker for a copy.
It is hard to think about dying. But many people believe it can be a time of growth and closeness with family and loved ones. Death is different for everyone. We can assist in controlling symptoms as well as helping with the emotional and spiritual distress. Our goal is to help you and your loved ones through this time with comfort, peace, and dignity.
Resources that may be useful:
American Cancer Society, Inc. Caring for the Patient with Cancer at Home - A Guide for Patients and Families. Atlanta: American Cancer Society, Inc., 2000.