This information explains what you and your family can expect toward the end of life and the options you have available.
You and your family may be wondering what lies ahead. We cannot tell you exactly what will happen, because people have different symptoms and different needs at the end of life. This resource will help you understand some of the symptoms you may experience toward the end of life and the options that are available to you.
Your family, friends, and other caregivers may also want to read the resource A Guide for Caregivers. It addresses issues that caregivers might face and provides resources and support.
Advanced Care Planning
At Memorial Sloan Kettering (MSK) 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 law that supports you in this effort. It is called the Palliative Care Information Act (2011). This law requires doctors and nurse practitioners to discuss care options with people with a terminal illness. A terminal illness is one in which death is expected within 6 months. They must talk about the prognosis, treatment options, including the risks and benefits, and pain and symptom relief.
Your doctor or nurse practitioner may speak with you about your end of life care or he or she may refer you to another healthcare provider to do so.
There may be a time when you are not able to make medical decisions for yourself, but would like to remain in control no matter how sick you are. By law, we are required to give this information to a person with authority to make decisions for you. This person is called your health care agent.
Your health care agent is designated on your Health Care Proxy form. A health care proxy is a legal document that identifies the person who will speak for you if you are unable to communicate for yourself. We recommend that you fill out a Health Care Proxy form to identify the person who knows your wishes. Additionally, we recommend that you speak with your health care agent about your wishes in advance so that he or she can speak on your behalf.
If you have not filled out a Health Care Proxy form, ask your nurse for the resources What You Need to Know about a Health Care Agent and Health Care Decisions: Protect Yourself—Plan Ahead.Back to top
Palliative care is an approach to caring for patients and their families. Palliative care specialists are healthcare professionals who are experts in helping people improve 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 (see the “Hospice Care” section below), palliative care can start when you are first diagnosed and can be provided along with chemotherapy and other treatments.
Your primary cancer doctor can often provide palliative care during this time, but sometimes people need more specialized palliative care. In this case, your primary doctor may consult MSK’s Palliative Medicine Service. The palliative care team includes doctors, nurses, nurse practitioners, social workers, chaplains, and other team members. The team will work closely with your cancer doctors to make you comfortable and improve your quality of life.
At some point, you and your doctor may decide that the goal of your care can no longer be to treat your cancer, but instead, to relieve your symptoms. With the focus shifted primarily to keeping you comfortable, you and your family can concentrate on the quality of the time you have left. You may live for days, weeks, or many months.Back to top
Hospice care is a type of palliative care that is given to people as they shift toward end-of-life care. Your oncologist or primary care doctor may recommend hospice services to you if you are estimated to have 6 months or less to live.
The goals of hospice are to:
- Help you live comfortably at the end stage of your life.
- Help you and your family cope with the changes that are happening.
- Help you have a peaceful death.
You may consider hospice care if your cancer no longer responds to treatment and you want to focus on managing your symptoms and improving your quality of life. You may also consider it if the burden of treatment is greater than its benefit. Enrolling in hospice is your decision. Your doctor may discuss hospice care with you and your family because it may be the care that best meets your needs at this time.
Hospice care is delivered by a team of healthcare professionals that specialize in this type of care. A hospice doctor is in charge of your care plan. Nurses and home health aides are involved in your day-to-day care. You can get 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 hospice care as an inpatient or an outpatient, including:
- At home
- In an assisted-living facility
- In a nursing home
- In a long-term care facility
- In a hospital that specializes in palliative care for people with cancer
Hospice care may be paid for by Medicare, Medicaid, or private health insurance. However, policies vary, so check with your insurer. Medications for symptom control are covered as part of your care.
If you are admitted to an inpatient hospice unit, hospice care is usually provided 24 hours a day. If you get hospice care at home, you will likely not have 24-hour nursing care. Your hospice team will help 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 out of pocket. If you go on hospice care, your hospice nurse will tell you what the hospice service can and cannot provide. Ask your case manager about hospice care in your area.Back to top
Other People Involved in Your End-of-Life Care
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 rely on your social worker to help you think about what you want and identify the values and goals for you and your family.
Your social worker can also:
- Provide 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 you and your family for your death.
- Help your family and healthcare team members communicate.
- Provide referrals to bereavement or support groups or community resources.
- Counsel family members, including children.
At MSK, case managers are registered nurses. They help you and your family with discharge planning, as well as:
- 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 as an inpatient or outpatient. When you are in the hospital, they work closely with your healthcare team.
Spiritual and religious concerns may arise during a serious illness, and especially as death draws near. You may be religious, or you may be spiritual, but not religious. Regardless, you may find it helpful for someone to support your beliefs and spiritual journey. 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 or confessing grievances.
- Connecting to faith communities.
Chaplains can offer prayer, a ritual, or simply provide a comforting presence.
Our chaplains are able to assess your needs as you and your family face your death. 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.
The Mary French Rockefeller All Faith Chapel is located in room M106 near the main lobby of Memorial Hospital at 1275 York Avenue. It is open 24 hours a day for prayer, meditation, or quiet contemplation. All are welcome.
To arrange for a visit from one of our chaplains, or from a local clergy from a Protestant, Catholic, Muslim, or Jewish congregation, please call 212-639-5982. The Chaplaincy Service Department is located in room C-170, off the main lobby of Memorial Hospital.
Our Integrative Medicine Service offers therapies that can complement your other care. These therapies are for people with cancer and their families. They are noninvasive, reduce stress, and help control distress.
Many of our therapies can help control pain, nausea, fatigue, anxiety, depression, poor sleep, 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 soothe their loved one, or to learn guided imagery techniques. For a complete listing, please visit our web page at www.mskcc.org/cancer-care/treatments/symptom-management/integrative-medicine
Treatments are free for MSK inpatients. For MSK outpatients or for family or friends, there is a charge. Check with your insurance company to see if they reimburse any of these treatments.
If you are an inpatient, call 212-639-4947 or speak with your healthcare team. Inpatient treatments are done at the bedside. If you are an outpatient, call 212-639-4700. Outpatient treatments are offered at 1429 First Avenue at East 74th Street.
A physical or occupational therapist can work with your family members. Your therapist can teach your family how to:
- Position and turn you in bed and chairs.
- Adjust your position to make you comfortable.
- Help you transfer safely from bed to chair or from bed to commode (portable toilet).
- Do passive exercises for your arms and legs. These can help you maintain some strength.
- Use proper body mechanics so they do not harm themselves.
Coping with cancer is difficult. Communicating with your family, friends, and healthcare team can help you cope.
As you become more dependent, your family and friends can work together to help you. Although it can be difficult, you may find it helpful to start a conversation with your family and friends about your wishes and feelings related to end of life. This can allow you to share emotions, tears, and laughter. It can also provide an opportunity to say things that you have always wanted to say.
Talking openly about end of life and death also helps you and your family and friends to plan, which can be very helpful. Practical guidance may involve many areas, including directions for burial and mourning and providing information on financial matters.Back to top
Help for Children Who Have a Loved One with Cancer
The diagnosis of a loved one with cancer affects every member of the family, especially children. The end of life has been found to be particularly stressful for children. Your instinct may be to protect your child from the sadness and confusion that you are feeling, no matter how young or old they are. 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 depending on their age and maturity.
All children will feel the pain in their own way. It may 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. Call the MSK Department of Social Work at 212-639-7020 and ask for a referral. The Social Work Department’s Kids Express Program has brochures, books, and other resources that will help you talk to your children about cancer and end of life. You can also call the MSK Counseling Center at 646-888-0200.Back to top
Advanced cancer can cause many problems that can affect eating. Symptoms you may have include:
- Decreased desire for food
- Feeling full after only a few bites of food
- Taste changes
- Bloating or gas
- Dry mouth
- Difficulty swallowing
- Nausea or vomiting
- Fatigue and weakness
It is normal to eat and drink less as you get closer to death and your body slows down. In the final weeks of life, the goal is to keep you comfortable. There is no rule on what foods you should be eating. Eat the foods that appeal to you the 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. This may give you more choices to enjoy your food and let you eat more.
Dry mouth may be a problem at this time. Some medications you may be taking can make it worse. You may find soft, moist foods and liquids most soothing. Try:
- Honeydew, cantaloupe, watermelon, or other fruits that have a lot of water
- Fruit yogurt
- Cottage cheese with fruit
- Ice cream, sherbet, or popsicles
- Macaroni and cheese
- Meat loaf with gravy
- Mashed potatoes with gravy
- Scrambled eggs
- Nutritional supplements or homemade milkshakes
Small, frequent meals are usually best. Large meals may be too filling or overwhelming. Place smaller portions of food on salad plates or saucers. This 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, you are no longer eating food for calories and protein. Even if you eat well, you may not gain weight. That is the nature of cancer toward the end of life. When you no longer enjoy food, meals may be stressful. Your family may encourage you to eat more. This may be a way for them to show their love and support. If eating is uncomfortable for you, you might find it to helpful to show your family this information.
In the final days, your body may not use food or liquids as usual. It is normal to stop feeling thirsty and hungry. Many people refuse food toward the end of life. This is a normal process as death approaches. Forcing food and liquid at this time can cause harm. 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 your 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 (IV) fluids through your vein. For some people, 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, IV 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 IV fluids 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.Back to top
Common Symptoms at the End of Life
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 people become confused and agitated. When people are confused, what they say may have no real meaning. They may see things that are not there. This can be very difficult for families to see and for you to experience. 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 symptom is part of the illness and should be treated.
Some people may be restless. This may be associated with pain or confusion or may occur on its own. These symptoms can vary in intensity. Different things can cause restlessness.
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 medications that help to calm you. The medications 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 see the time.
- Place a calendar or clearly visible note that identifies the date - “Today is Monday, October 12, 2015.”
- Minimize noise levels in the room.
- Continue to help you wear your hearing aids or glasses when possible.
- Give you pain medication.
- Talk calmly and softly.
- Explain all actions before they are done - “I am going to turn you now.”
- Place familiar objects around you.
- Promote relaxation and sleep.
- Administer oxygen, if ordered.
- Administer medication to treat delirium.
- Avoid doing anything that makes you uncomfortable or fearful.
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 medications. The most common are those to treat pain, nausea, and depression, but other medications can also cause it. Constipation can also be caused by the disease itself as the tumor grows and affects different organs. Diet and decreased activity can make it worse.
There are many over-the-counter medications that treat constipation, such as stool softeners and laxatives. Some examples of these medications are docusate sodium (Colace®), which is a stool softener, and senna (Senokot®), which is a laxative. You do not need a prescription for these medications, but talk with your healthcare team before you start taking them.
Ask your doctor what medication to take and how much. If these do not work, tell your doctor or nurse. You may need a prescription for a stronger medication.
Things you can do
Try to drink liquids, if you can. Include water, juices, soups, and ice cream. You can also speak with your dietitian about foods that might help with constipation. As you get closer to the end of your life, changes in your diet may not be possible because you will be eating less.
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 medications, such as:
- Loperamide (Imodium®)
- Bismuth subsalicylate (Pepto Bismol® or Kaopectate®)
Things you can do
Your doctor may encourage you to drink more liquids to help prevent dehydration. Drink clear liquids, such as apple juice, water, broth, and ices. Try sucking on ice pops. If you cannot swallow, keep your mouth moist with a small amount of ice chips. 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 having 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:
- Teva® (Serenity)
It is important to change the pads frequently to prevent skin irritation. It is also important to keep the area near your rectum clean. Wash the area with gentle soap and water. Apply ointment after each bowel movement. Ointments you can use include:
- Desitin® ointment
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, which is called “aspiration.” This can cause pneumonia. These symptoms are more common in people whose cancer is located 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, you may need IV hydration. See the section called “Hydration” above.
Things you can do
You may need only a change of diet, including chopping your food or puréeing it to make it easier to swallow. Ask your nurse for the resource Eating Guide for Puréed and Mechanical Soft Diets. You may also use a thickening agent such as Thicken-Up® to make it safe for you to swallow.
The time leading to death can be very difficult. Feeling sad and anxious is normal and expected. If you feel that depression and anxiety are interfering with most areas of your life, talk with your doctor or nurse.
Sometimes it may be your loved one who is depressed or anxious. Ask your doctor, nurse, or social worker for support services available for caregivers.
Depression and anxiety can be treated with talk therapy or medication. Often, these 2 approaches are used together. Tell your healthcare team how you feel, so they can help you.
MSK also has counselors available for you and your family at the MSK Counseling Center. Our counselors provide counseling for individuals, couples, families, and groups, as well as medications to help with anxiety or depression. To reach the MSK Counseling Center, call 646-888-0200.
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. People often tell us they cannot walk even short distances. Fatigue can also make other symptoms worse, 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 make your fatigue worse. Do not wait until your pain level is high to take pain medication.
- Medications 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.
- Antianxiety or antidepressant medications may help you feel better overall. Ask your doctor if you should try them.
- Sadness can make your fatigue worse. If you are feeling this way, discuss it with your family and friends. Tell your doctor, nurse, social worker, or chaplain. If they understand how you are feeling, they can try to 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, if you can.
- Reading, writing, or doing another activity may keep you more alert. This can lessen your fatigue.
- Conserve your energy. Don’t be afraid to ask for help with simple things such as bathing or eating.
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.
Your doctor can usually give you medication to control nausea and vomiting.
Things you can do
- Do not try to eat until the symptom subsides. It may be helpful to drink liquids such as warm tea, which you may be able to tolerate.
- Constipation can cause nausea and vomiting, so try to prevent it. See “Constipation” section above for more information.
- If you feel that your pain medication or other medications are causing your nausea and vomiting, tell your doctor or nurse. They may be able to change the medication.
- Eat small meals and avoid spicy foods. These may trigger nausea due to their smell. Try to eat foods that are bland.
- Avoid hot foods. Try foods that are at room temperature or are cold.
- Avoid strong odors and perfumes. Ask your family and friends to do the same when they are around you.
- Consider trying other techniques, such as acupuncture, relaxation, distraction, and hypnosis. You can do these techniques at home once you become familiar with them. Our Integrative Medicine Service can teach you some of these techniques. Go to www.mskcc.org/cancer-care/treatments/symptom-management/integrative-medicine for more information.
Controlling pain is a big part of your overall cancer care and is very important at the end of your life. Tell your doctor or nurse if you are having any new pain or if your pain gets worse.
Take your pain medication by mouth as long as you can and on a regular schedule. It is better to take it when your pain level is at a 3 or 4 on a scale of 0 to 10. If you have difficulty swallowing your pills, the medication can be given in other ways.
Some people may have procedures such as palliative radiation therapy to relieve bone pain or nerve blocks. Palliative radiation therapy is given to help with symptoms, not to cure the cancer. It can also be used to shrink a tumor that causes pain by pressing on nerves.
Things you can do
Talk with your doctor and nurse. Some people worry that taking a lot of pain medication may cause addiction or hasten death. Other people are worried about the side effects from pain medication. Tell your doctor or nurse if you have these concerns. Your healthcare team wants to make you as comfortable as possible when you are dying. This includes aggressively controlling your pain while reducing the side effects of the medications.
Shortness of breath is common at the end of life. It feels as if you cannot get enough air. It can occur in people with any cancer at the end of life. There may be more than one cause of your shortness of breath.
Shortness of breath can vary in severity. You may only become short of breath when climbing stairs or you may experience it when at rest. Tell your doctor or nurse if you are having this symptom. It can be treated.
Treatment of shortness of breath depends on what is causing it. Your doctor may remove fluid that is pressing on your lungs. You may need a blood transfusion. You may get medication to relax the muscles in your airways or pain medication to help with the feeling of breathlessness. Oxygen can help some people.
There are many ways to improve this symptom. 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.
Things you can do
- 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. Drinking warm beverages or sucking on lozenges or hard candy may also help.
- Do any activity that helps you to calm down and relax. Try prayer, meditation, listening to music, or relaxation exercises.
In the last hours of life, you may develop a rattling sound in your breathing. This happens because saliva or fluids collect in your throat or upper airways (terminal secretions) and you may be too weak to clear them. It may not make you uncomfortable, but it may worry your family and friends.
Your doctor or nurse may order medication to decrease the secretions.
Things your family can do
They can change your position to see if that stops it. They should avoid suctioning, because it can cause discomfort.
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 may 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.
These processes are normal at the end of life, but can be frightening for you and your family if you are not prepared for what to expect. Speak with your healthcare team about any questions and concerns you and your family may have.Back to top
After a person dies, MSK counselors can:
- Help loved ones with feelings associated with your death.
- Meet with the family to help them with any plans that are needed, including providing information and resources about funeral options.
- Tell them about bereavement services offered at MSK, including support groups and in-person counseling.
- Tell them about other services in the community that can help during this difficult time.
You can learn more about the MSK Bereavement Program by calling 646-888-4889.Back to top
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. Our goal is to help you and your loved ones through this time with comfort, peace, and dignity.Back to top