This information explains what you and your family can expect and the options you have towards the end of life.
You and your family may be wondering what lies ahead. We can’t 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 explains issues that caregivers might face and provides resources and support.
Advanced Care Planning
At 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’s called the Palliative Care Information Act (2011). This law requires doctors and nurse practitioners (NPs) 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 your prognosis, treatment options, including the risks and benefits, and pain and symptom relief.
Your doctor or NP will talk with you about your end of life care. They may also refer you to another healthcare provider for more information.
Health Care Proxy
There may be a time when you aren’t 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 (also called a proxy or representative).
Your health care agent is designated on your Health Care Proxy form. A health care proxy is a legal document that identifies the person you want to make medical decisions for you if you can’t make them for yourself. We recommend that you fill out a Health Care Proxy form to identify the person who knows your wishes. We also recommend that you speak with your health care agent about your wishes in advance so that they can speak on your behalf.
If you’re interested in completing a Health Care Proxy form, talk with your healthcare providers. For more information, read Advance Care Planning and How to Be a Health Care Agent.
Palliative care is a medical specialty that focuses on improving the quality of life for people with a serious illness through symptom management and emotional support. Unlike hospice care, which is for people nearing the end of life (see the “Hospice Care” section below), palliative care can start at any point during an illness. You can also get palliative care along with chemotherapy and other treatments.
Your cancer doctor can usually provide palliative care, but sometimes people need more specialized palliative care. In this case, you and your doctor may consult MSK’s Supportive Care Service. The Supportive Care Service includes doctors, nurses, nurse practitioners, physician assistants, social workers, chaplains, pharmacists, and other healthcare providers. The team works 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. Instead, the goal may be to relieve your symptoms. With the focus shifted primarily to keeping you comfortable, you and your family can focus on the quality of the time you have left. You may live for days, weeks, or many months.
Hospice care is a type of care that starts when a person’s life may be 6 months or less. The goal of hospice care is to provide comfort and support while stopping any treatments that try to cure a disease. Hospice care can take place at home or in a healthcare facility.
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. Starting 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 in different settings, 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. Check with your insurance company to learn about your coverage. Medications to help you manage your symptoms and equipment, such as a shower chair and commode (portable toilet), are usually covered as part of your care.
If you’re admitted to an inpatient hospice unit, hospice care is usually provided 24 hours a day.
If you get hospice care at home, you’ll 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 you or your family over the phone. A home health aide is usually provided for a limited number of hours, a few days per week. If you need additional help at home, you may have to pay for it.
If you decide to get hospice care, your hospice nurse will tell you what the service can and cannot provide. Ask your case manager about hospice care in your area.
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 will need to make decisions about your end of life care. This 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 communicate.
- Provide referrals to bereavement or support groups and community resources.
- Counsel family members, including children.
At MSK, case managers are registered nurses. They help you and your family with discharge planning, including:
- Arrange for services such as home care, home hospice, or placement in a care facility as needed.
- Arrange for nursing visits, physical therapy (PT), 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’re in the hospital, they work closely with your healthcare team.
Spiritual and religious concerns may come up during a serious illness and as you near the end of your life. You may be religious, you may be spiritual, or you may be neither of these. Regardless, you may find it helpful to have someone to support your questions of identity, meaning, purpose, value, and worth. Chaplains are available to:
- Listen to your concerns about illness or hospitalization without judgment.
- Help support family members experiencing feelings of grief and loss.
- Provide you with a comforting presence.
- Help you with end-of-life decisions.
- Pray, meditate, or join in ritual with you.
- Contact community clergy or faith groups for you.
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 also arrange to have a clergy person from your faith visit you.
The Mary French Rockefeller All Faith Chapel is located in room M106 near the main lobby of Memorial Hospital at 1275 York Avenue. It’s 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, call 212-639-5982. The Spiritual Care department is in room C-170, off the main lobby of Memorial Hospital.
Our Integrative Medicine Service offers therapies that can complement (go along with) 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 therapies that are right for you. We offer massages, 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. Check with your insurance company to see if they reimburse any of these treatments. For a complete listing, visit www.mskcc.org/cancer-care/treatments/symptom-management/integrative-medicine
Integrative Medicine treatments are offered at 205 East 64th Street. To make an appointment, call call 646-608-8550.
Physical and occupational therapy
A physical or occupational therapist can work with your family members. Your therapist can teach your family how to:
- Position and turn you in your bed and chairs.
- Adjust your position to make you comfortable.
- Help you transfer safely from bed to chair or from bed to commode.
- Do passive exercises for your arms and legs. These can help you maintain some strength.
- Move their bodies properly so they don’t harm themselves.
Coping with cancer is difficult. Communicating with your family, friends, and healthcare team can help you cope.
As you become more dependent on others, your family and friends can work together to help you. While 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 the end of your life. This will create the space for you and your family and friends 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 plan, which can be very helpful. You can help your family plan for burial and mourning, financial matters, and many other things.
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 especially stressful for children. You may feel you need to protect your child from the sadness and confusion that you’re feeling, no matter how young or old they are. But, it’s better to be honest about what’s 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 them 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’ll answer them. For more information, read our resource Preparing Your Child for a Parent’s Death.
If you’re having trouble talking to your children, ask a family member or friend to help you. There are also social workers who can help you with this. Call the Social Work Department at 212-639-7020 and ask for a referral.
The Social Work Department’s Talking with Children About Cancer program has brochures, books, and other resources that will help you talk to your children about cancer and end of life. For more information, visit www.mskcc.org/experience/patient-support/counseling/talking-with-children. You can also call the MSK Counseling Center at 646-888-0200.
Advanced cancer can cause issues that can affect your appetite and 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.
- Trouble swallowing.
- Nausea (feeling like you’re going to throw up).
- Vomiting (throwing up).
- Constipation (having fewer bowel movements than usual).
- Fatigue (feeling unusually tired or weak).
It’s 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 you’d like to eat. If you were on a restricted diet before (such as a diabetic diet), your healthcare providers 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.
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 bites of food or sips of liquids throughout the day. Keep your favorite foods on hand.
At this point, you’re 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 be able to process food or liquids as usual. It’s normal to stop feeling thirsty and hungry. Many people don’t want to eat 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 talk with a clinical dietitian nutritionist or your healthcare team to help them understand what’s going on.
If you can’t eat or drink much, you can become dehydrated. Symptoms of dehydration include dry mouth and skin, less urination, and dark, amber-colored urine (pee). Keeping your mouth clean and moist with wet swabs, crushed ice, or small sips of water can increase your comfort.
You and your healthcare provider will decide whether you should have intravenous (IV) fluids through your vein. For some people, hydration is a religious requirement. Hydration may also 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. This may make you 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 healthcare provider 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’ll need the help of a nursing service and a home infusion company. You’ll also need caregiver support. Your case manager will arrange this for you.
Common Symptoms at the End of Life
Let your healthcare provider know if you’re having any of the following symptoms. Early treatment makes them much easier to control. It will also make you more comfortable.
Confusion, restlessness, and agitation
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 isn’t who you are. This is from the disease and what’s 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 feel restless. Different things can cause restlessness, including pain. It may also happen on its own. These symptoms can vary in intensity.
Healthcare providers treat confusion and agitation by addressing the underlying cause when possible. 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 shows the date, such as “today is Thursday, March 4, 2021.”
- Minimize noise 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’re done. For example, they can say “I’m going to turn you now.”
- Place familiar objects around you.
- Promote relaxation and sleep.
- Give you oxygen, if recommended by your healthcare provider.
- Give you 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 or you may have trouble passing hard stool. As you get closer to the end of your life, you should still expect to have some bowel movements, even if you aren’t eating much.
Constipation 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 senna (Senokot®) and polyethylene glycol (Miralax®). You may also have hard stools when you’re constipated. There are also over the counter medications (medications you get without a prescription) that treat hard stools, such as docusate sodium (Colace®). You don’t need a prescription for these medications, but talk with your healthcare team before you start taking them.
Ask your healthcare provider what medication to take and how much. If these don’t work, tell your healthcare provider. You may need a prescription for a stronger medication.
Things you can do
Try to drink liquids, if you can, including water, juices, soups, and ice cream. You can also talk with your clinical nurse 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’ll be eating less.
Diarrhea is loose and watery bowel movements. At the end of life, both the disease and its treatment can cause diarrhea.
Ask your healthcare provider if you can take over the counter medications, such as:
- Loperamide (Imodium®)
- Bismuth subsalicylate (Pepto Bismol® or Kaopectate®)
Things you can do
Your healthcare provider 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 can’t swallow, keep your mouth moist with a small amount of ice chips. Keep your lips moistened with lip balm if you can’t drink.
Avoid milk and other dairy products. Don’t eat foods that are irritating, such as spicy foods. Eat frequent, small meals whenever possible.
There are products available for adults who are active even with having diarrhea. Adult incontinent pads can be used when you’re in bed. You can find these products in your pharmacy and some grocery stores. They include:
It’s important to change pads frequently to prevent skin irritation. It’s 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, which may make you cough after swallowing. This can cause aspiration (when food gets into your lungs). Aspiration can cause pneumonia (lung infection). These symptoms are more common in people who have cancer in their chest or neck. Tell your healthcare provider if you have these symptoms.
Your healthcare provider may tell you it isn’t safe to eat or drink at all. In that case, you may need IV hydration. Read the section called “Hydration” in this resource.
Things you can do
You may need to only change your diet, including chopping your food or puréeing it to make it easier to swallow. Ask your nurse for the resource Eating Guide for Puréed Food and Mechanical Soft Food Diets. You may also use a thickening agent, such as Thicken-Up®, to make it safe for you to swallow.
Depression and anxiety
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 healthcare provider.
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 or read Caregiver Support Services.
Depression and anxiety can be treated with talk therapy, medication, or both. Talk with your healthcare team about 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 feeling unusually tired and weak. It’s the most common symptom at the end of life. It can range from mild to severe. People often tell us they can’t 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.
Ignoring or trying to take the pain may cause stress and make your fatigue worse. Don’t 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 don’t have to take them every day. Your doctor, NP, or PA can prescribe them for you.
- Antianxiety or antidepressant medications may help you feel better overall. Ask your healthcare provider if you should try them.
- Sadness can make your fatigue worse. If you’re feeling this way, talk about it with your family and friends. Tell your doctor, nurse, social worker, or chaplain. If they understand how you’re feeling, they can try to help.
Things you can do
- Try to walk short distances every day, if you can. Sitting up or getting out of bed may help to lessen fatigue if you have a hard time walking.
- Reading, writing, or doing a puzzle may keep you more alert. This can lessen your fatigue.
- Save your energy. Don’t be afraid to ask for help with simple things, such as bathing or eating. Try planning activities for when you have the most energy, such as when you first wake up. Plan for periods of rest between activities to help you catch your breath.
Nausea and vomiting
Nausea and vomiting are symptoms that may occur at the end of life. Nausea may begin as an unpleasant feeling, like being motion sickness. It may or may not cause you to vomit.
Your healthcare provider can usually give you medication to control nausea and vomiting.
Things you can do
- Don’t try to eat until the symptom get better. It may be helpful to drink liquids, such as warm tea.
- Constipation can cause nausea and vomiting so try to prevent it. See the “Constipation” section of this resource for more information.
- If you feel that your pain medication or other medications are causing your nausea and vomiting, tell your healthcare provider. They may be able to change the medication.
- Eat small meals.
- Avoid spicy foods. These may trigger nausea due to their smell. Try to eat foods that are bland, such as toast and crackers.
- Avoid strong odors and perfumes. Ask your family and friends to do the same when they’re around you.
- Try 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. Visit www.mskcc.org/cancer-care/treatments/symptom-management/integrative-medicine for more information.
Controlling pain is a big part of your cancer care and is very important at the end of your life. Tell your healthcare provider if you’re having any new pain or if your pain gets worse.
Take your pain medication as long as you can and on a regular schedule. It’s better to take it when your pain level is at a 3 or 4 on a scale of 0 to 10. If you have trouble swallowing your pills, the medication can be given in other ways.
Some people may have procedures, such as palliative radiation therapy or nerve blocks, to relieve pain. 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 healthcare provider. Some people worry that taking a lot of pain medication may cause addiction or speed up death. Other people are worried about the side effects from pain medication. Tell your healthcare provider if you have these concerns. Your healthcare team wants to make you as comfortable as possible when you’re dying. This includes aggressively controlling your pain while reducing the side effects of medications.
Shortness of breath (dyspnea)
Shortness of breath is common at the end of life. It feels as if you can’t 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 be different for everyone. You may only become short of breath when climbing stairs or you may experience it when at rest. Tell your healthcare provider if you’re having this symptom. It can be treated.
Treatment for shortness of breath depends on what’s causing it for you. Some people may need to remove fluid that’s pressing on their lungs or 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 make it easier to breathe as well.
There are many ways to improve this symptom. It’s important to tell your healthcare provider how you’re feeling. If you’re 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 wedge pillow 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’re getting more air.
- Point a fan directly at your face. This can help with shortness of breath.
- In the winter, use a humidifier. People often breathe through their mouths when they feel short of breath. This can make your mouth feel dry. Adding moisture to the air with a humidifier may make you more comfortable. Drinking warm drinks 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 have a rattling sound in your breathing. This happens because saliva or fluids collect in your throat or upper airways. This is called terminal secretions. You may be too weak to clear them. It may not make you uncomfortable, but it may worry your family and friends.
Your healthcare provider 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.
When Death is Near
At the end of life, you’ll 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 may become cooler. Breathing may become shallow. A sigh may be followed by a period of no breathing. This pattern will 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. But, 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 aren’t prepared for what to expect. Talk with your healthcare team about any questions and concerns you and your family may have.
After a person dies, MSK social workers can:
- Help loved ones with feelings associated with your death.
- Meet with your family to help them with any plans that are needed, including providing information and resources about funeral options.
- Talk with your family about bereavement services offered at MSK, including support groups and in-person counseling.
- Talk with your family 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.
It’s 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.
American Cancer Society
Caregiver Resource Guide
National Cancer Institute
Coping with Advanced Cancer: Choices for Care Near the End of Life
End-of-Life Care for People Who Have Cancer
Last Days of Life
Transitional Care Planning
When Someone You Love Has Advanced Cancer: Support for Caregivers
US National Library of Medicine
End of Life Issues