Planning for the end of life can be difficult. But by deciding what end-of-life care best suits your needs when you are healthy, you can help those close to you make the right choices when the time comes.

End-of-life planning usually includes making choices about the following:

• The goals of care (for example, whether to use certain medicines during the last days of life)
• Where you want to spend your final days
• Which treatments for end-of-life care you wish to receive
• What type of palliative care and hospice care you wish to receive

Advance directives can help make your wishes clear to your family and health care providers.

End-of-life care is the term used to describe the support and medical care given during the time surrounding death. This type of care does not happen only in the moments before breathing ceases and the heart stops beating. Older people often live with one or more chronic illness and need significant care for days, weeks, and even months before death.

The end of life may look different depending on the person’s preferences, needs, or choices. Some people may want to be at home when they die, while others may prefer to seek treatment in a hospital or facility until the very end. Many want to be surrounded by family and friends, but it’s common for some to slip away while their loved ones aren’t in the room. When possible, there are steps you can take to increase the likelihood of a peaceful death for your loved one, follow their end-of-life wishes, and treat them with respect while they are dying.

Generally speaking, people who are dying need care in four areas: physical comfort, mental and emotional needs, spiritual needs, and practical tasks. Of course, the family of the dying person needs support as well, with practical tasks and emotional distress.

The three most common places people at the end-of-life die are at home, in a hospital, or in a care facility. While not everyone has the chance to decide where they will die, people who know the end of life is approaching may be able to plan ahead. Several factors may help with this planning, including knowing the type of care you need and want, where you can receive this level of care, advance care directives, costs, and availability of family and friends to help.

End-of-life care at home

Home is likely the most private setting for someone who needs end-of-life care. It allows for family and friends to come and go freely and may give the person who is dying a sense of comfort. Services such as visiting nurses as well as special equipment, such as a hospital bed or bedside commode, can be arranged to be at the home.

It’s important for a caregiver or family member to work closely with the health care team to decide the type of comfort care needed at home in order to make the dying person as comfortable as possible. This type of care can often be provided by nursing assistants or family and friends without medical training. However, a doctor will continue to oversee the patient's health care plan. Hospice care is frequently used at home.

Caring for someone who is at home at the end of life can be physically, emotionally, and financially demanding for the people providing the care. Extra support from paid caregivers or home service providers, also known as respite care, can help. If the person who is dying is returning home from the hospital, sometimes a hospital discharge planner, who is often a social worker, will be able to help with the logistics. Your local Area Agency on Aging might be able to recommend other sources of help.

End-of-life care in hospitals

In a hospital setting, you will have access to medical professionals who understand the needs of a dying person. This can be very reassuring to both the person and their family.

In addition to the regular care team, some hospitals have palliative and hospice care teams that can assist with managing uncomfortable symptoms at the end of life, such as digestive issues or pain. These teams can also help with making medical decisions for patients or families.

No matter which end-of-life care setting you choose, it’s important to make plans for this care in advance. Having these documents in place helps medical staff provide the care that you wish to receive at the end of life and helps family members avoid having to make difficult decisions about your care without your input. Learn more about advance care planning.

End-of-life care in nursing homes or other care facilities

Many people are in care facilities, such as nursing homes, at the end of life. In a nursing home, nursing staff are always present. Unlike a hospital, a doctor is not in the facility at all times but is available when needed.

Some people are discharged from a hospital to a care facility, while others may already be living in one. If you have lived in a nursing home or long-term care facility for a while, you may choose to stay and receive end-of-life care there. You and your family may already have a relationship with staff who work there, which can help make the care feel more personalized than in a hospital.

If you are receiving hospice care, the hospice team can assist the care facility staff with end-of-life care.

You are probably reading this because someone close to you is dying. You may wonder how you can comfort the person, prevent suffering, and provide the best quality of life possible in their remaining time. If the person can no longer communicate, you may be asked to make difficult decisions about their care and comfort. This can be overwhelming for family members, especially if they have not had a chance to discuss the person’s wishes ahead of time — or if multiple family members are involved and do not agree.

Addressing a person’s advance care wishes

If the person has written documents as part of an advance care plan, such as a do not resuscitate order, tell the doctor in charge as soon as possible. If end-of-life care is given at home, you will need a special out-of-hospital order, signed by a doctor, to ensure that emergency medical technicians, if called to the home, will respect the person’s wishes. Hospice staff can help determine whether a medical condition is part of the normal dying process or something that needs the attention of health care personnel.

For situations that are not addressed in a person’s advance care plan, or if the person does not have such a plan, you can consider different decision-making strategies to help determine the best approach for the person.

Decision-making strategies: Substituted judgment and best interests

Two approaches might be useful when you encounter decisions that have not been addressed in a person’s advance care plan or in previous conversations with them. One is to put yourself in the place of the person who is dying and try to choose as they would. This is called substituted judgment. Some experts believe that decisions should be based on substituted judgment whenever possible. Another approach, known as best interests, is to decide what you as their representative think is best for the dying person. This is sometimes combined with substituted judgment.

These two approaches are illustrated in the stories below.

Joseph and Leilani’s story

Joseph’s 90-year-old mother, Leilani, was in a coma after having a major stroke. The doctor said damage to Leilani’s brain was widespread and she needed to be put on a breathing machine (ventilator) or she would probably die. The doctor asked Joseph if he wanted that to be done. Joseph remembered how his mother disapproved when an elderly neighbor was put on a similar machine after a stroke. He declined, and his mother died peacefully a few hours later. This is an example of the substituted judgment approach.

Ali and Wadi’s story

Ali’s father, Wadi, is 80 years old and has lung cancer and advanced Parkinson’s disease. He is in a nursing facility and doesn’t recognize Ali when he visits. Wadi’s doctor suggested that surgery to remove part of one of Wadi’s lungs might slow down the course of the cancer and give him more time. But, Ali thought, “What kind of time? What would that time do for Dad?” Ali decided that putting his dad through surgery and recovery was not in Wadi’s best interests. After talking with Wadi’s doctors, Ali believed that surgery, which could cause additional pain and discomfort, would not improve his father’s quality of life. This is an example of the best interests decision-making approach.

If you are making decisions for someone at the end of life and are trying to use one of these approaches, it may be helpful to think about the following questions:

• Have they ever talked about what they would want at the end of life?
• Have they expressed an opinion about someone else’s end-of-life treatment?
• What were their values and what gave meaning to their life? Maybe it was being close to family and making memories together. Or perhaps they loved the outdoors and enjoyed nature. Are they still able to participate in these activities?

If you are making decisions without specific guidance from the dying person, you will need as much information as possible to help guide your actions. Remember that the decisions you are faced with and the questions you may ask the person’s medical team can vary depending on if the person is at home or in a care facility or hospital. You might ask the doctor:

• What might we expect to happen in the next few hours, days, or weeks if we continue our current course of treatment?
• Will treatment provide more quality time with family and friends?
• What if we don’t want the treatment offered? What happens then?
• When should we begin hospice care? Can they receive this care at home or at the hospital?
• If we begin hospice, will the person be denied certain treatments?
• What medicines will be given to help manage pain and other symptoms? What are the possible side effects?
• What will happen if our family member stops eating or drinking? Will a feeding tube be considered? What are the benefits and risks?
• If we try using the ventilator to help with breathing and decide to stop, how will that be done?

It is a good idea to have someone with you when discussing these issues with medical staff. That person can take notes and help you remember details. Don’t be afraid to ask the doctor or nurse to repeat or rephrase what they said if you are unclear about something they told you. Keep asking questions until you have all the information you need to make decisions. If the person is at home, make sure you know how to contact a member of the health care team if you have a question or if the dying person needs something.

It can be difficult for doctors to accurately predict how much time someone has left to live. Depending on the diagnosis, certain conditions, such as dementia, can progress unpredictably. You should talk with the doctor about hospice care if they predict your loved one has six months or less to live.

Cultural considerations at the end of life

Everyone involved in a patient’s care should understand how a person’s history and cultural and religious background may influence expectations, needs, and choices at the end of life. Different cultural and ethnic groups may have various expectations about what should happen and the type of care a person receives. The doctor and other members of the health care team may have different backgrounds than you and your family. Discuss your personal and family traditions surrounding the end of life with the health care team.

A person’s cultural background may influence comfort care and pain management at the end of life, who can be present at the time of death, who makes the health care decisions, and where they want to die.

It’s crucial that the health care team knows what is important to your family surrounding the end of life. You might say:

• In my religion, we . . . (then describe your religious traditions regarding death).
• Where we come from . . . (tell what customs are important to you at the time of death).
• In our family when someone is dying, we prefer . . . (describe what you hope to happen).

Make sure you understand how the available medical options presented by the health care team fit into your family’s desires for end-of-life care. Telling the medical staff ahead of time may help avoid confusion and misunderstandings later. Knowing that these practices will be honored could comfort the dying person and help improve the quality of care provided.

Discussing a care plan

Having a care plan in place at the end of life is important in ensuring the person’s wishes are respected as much as possible. A care plan summarizes a person’s health conditions, medications, health care providers, emergency contacts, end-of-life care wishes, such as advance directives, and other decisions. A care plan may also include your loved one’s wishes after they die, such as funeral arrangements and what will be done with their body. It’s not uncommon for the entire family to want to be involved in a person’s care plan at the end of life. Maybe that is part of your family’s cultural tradition. Or, maybe the person dying did not pick a person to make health care choices before becoming unable to do so, which is also not unusual.

If one family member is named as the decision-maker, it is a good idea, as much as possible, to have family agreement about the care plan. If family members can’t agree on end-of-life care or they disagree with the doctor, your family might consider working with a mediator. A mediator is a professional trained to bring people with different opinions to a common decision. Clinicians trained in palliative care often conduct family meetings to help address disagreements around health care decisions.

Regardless, your family should try to discuss the end-of-life care they want with the health care team. In most cases, it’s helpful for the medical staff to have one person as the main point of contact.

Here are some questions you might want to ask the medical staff when making decisions about a care plan:

• What is the best place — such as a hospital, facility, or at home — to get the type of care the dying person wants?
• What decisions should be included in our care plan? What are the benefits and risks of these decisions?
• How often should we reassess the care plan?
• What is the best way for our family to work with the care staff?
• How can I ensure I get a daily update on my family member’s condition?
• Will you call me if there is a change in his or her condition?
• Where can we find help paying for this care?

There may be other questions that arise depending on your family’s situation. It’s important to stay in contact with the health care team.

End-of-life care can also include helping the dying person manage mental and emotional distress. Someone who is alert near the end of life might understandably feel depressed or anxious. It is important to treat emotional pain and suffering. You might want to contact a counselor, possibly one familiar with end-of-life issues, to encourage conversations about feelings. Medicine may help if the depression or anxiety is severe.

The dying person may also have some specific fears and concerns. He or she may fear the unknown, or worry about those left behind. Some people are afraid of being alone at the very end. These feelings can be made worse by the reactions of family, friends, and even the medical team. For example, family and friends may not know how to help or what to say, so they stop visiting, or they may withdraw because they are already grieving. Doctors may feel helpless and avoid dying patients because they cannot help them further.

And some people may experience mental confusion and may have strange or unusual behavior, making it harder to connect with their loved ones. This can add to a dying person's sense of isolation.

Here are a few tips that may help manage mental and emotional needs:

• Provide physical contact. Try holding hands or a gentle massage.
• Set a comforting mood. Some people prefer quiet moments with less people. Use soft lighting in the room.
• Play music at a low volume. This can help with relaxation and lessen pain.
• Involve the dying person. If the person can still communicate, ask them what they need.
• Be present. Visit with the person. Talk or read to them, even if they can’t talk back. If they can talk, listen attentively to what they have to say without worrying about what you will say next. Your presence can be the greatest gift you can give to a dying person.

Discomfort during the dying process can come from a variety of sources. Depending on the cause of the discomfort, there are things you or a health care provider can do to help make the dying person more comfortable. For example, the person may be uncomfortable because of:

• Pain
• Breathing problems
• Skin irritation, including itching
• Digestive problems
• Temperature sensitivity
• Fatigue

Pain. Not everyone who is dying experiences pain. For those who do, experts believe that care should focus on relieving pain without worrying about possible long-term problems of drug dependence or abuse.

Struggling with severe pain can be draining and make the dying person understandably angry or short-tempered. This can make it even harder for families and other loved ones to communicate with the person in a meaningful way.

Caregivers and other family members can play significant roles in managing a dying person’s pain. But knowing how much pain someone is in can be difficult. Watch for clues, such as trouble sleeping, showing increased agitation, or crying. Don’t be afraid of giving as much pain medicine as is prescribed by the doctor.

Pain is easier to prevent than to relieve, and severe pain is hard to manage. Try to make sure that the level of pain does not get ahead of pain-relieving medicines. Tell the health care professionals if the pain is not controlled because medicines can be increased or changed. Palliative medical specialists are experienced in pain management for seriously ill patients; consider consulting with one if they’re not already involved.

What about morphine and other painkillers?

Morphine is an opiate, a strong drug used to treat serious pain. Sometimes, morphine is also given to ease the feeling of shortness of breath. Successfully reducing pain and addressing concerns about breathing can provide needed comfort to someone who is close to dying. Side effects may include confusion, drowsiness, or hallucinations. Talk with the person’s health care team if you have any questions about the side effects of morphine or other pain medications.

Breathing problems. Shortness of breath or the feeling that breathing is difficult is a common experience at the end of life. The doctor might call this dyspnea. To help ease breathing for your loved one, try raising the head of the bed, opening a window, using a humidifier, or using a fan to circulate air in the room. Sometimes, morphine or other pain medications can help relieve the sense of breathlessness.

There may be times when a dying person has an abnormal breathing pattern, known as Cheyne-Stokes breathing. The person’s breathing may alternate between deep, heavy breaths and shallow or even no breaths. Some people very near death might have noisy breathing, sometimes called a death rattle. In most cases, this noisy breathing does not upset the dying person, though it may be alarming to family and friends. You may try turning the person to rest on one side or elevating their head. Prescription medicine may also help.

Skin irritation. Skin problems can be very uncomfortable for someone when they are dying. Keep the person’s skin clean and moisturized. Gently apply alcohol-free lotion to relieve itching and dryness.

Dryness on parts of the face, such as the lips and eyes, can be a common cause of discomfort near death. These tips may help:

• Apply a balm or petroleum jelly to the lips.
• Gently dab an eye cream or gel around the eyes.
• Try placing a damp cloth over the person’s closed eyes.
• If the inside of the mouth seems dry, giving ice chips (if the person is conscious) or wiping the inside of the person’s mouth with a damp cloth, cotton ball, or specially treated swab might help.

Sitting or lying in one position can put constant pressure on sensitive skin, which can lead to painful bed sores (sometimes called pressure ulcers). When a bed sore first forms, the skin gets discolored or darker. Watch carefully for these discolored spots, especially on the heels, hips, lower back, and back of the head.

Turning the person in bed every few hours may help prevent bed sores and stiffness. Try putting a foam pad under the person’s heel or elbow to raise it off the bed and reduce pressure. Ask a member of your health care team if a special mattress or chair cushion might also help.

Digestive problems. Nausea, vomiting, constipation, and loss of appetite are common issues at the end of life. Swallowing may also be a problem. The causes and treatments for these symptoms vary, so talk to a doctor or nurse about what you’re seeing. Medicines can control nausea or vomiting or relieve constipation, all of which are common side effects of strong pain medications.

If the person loses their appetite, try gently offering favorite foods in small amounts. Serve frequent, smaller meals rather than three larger ones. Help with feeding if the person wants to eat but is too tired or weak.

But don’t force a dying person to eat. Losing one’s appetite is a common and normal part of dying. Going without food and/or water is generally not painful, and eating and drinking can add to a dying person’s discomfort. A conscious decision to give up food can be part of a person’s acceptance that death is near.

Temperature sensitivity. When a person is closer to death, their hands, arms, feet, or legs may be cool to the touch. Some parts of the body may become darker or blueish. People who are dying may not be able to tell you that they are too hot or too cold, so watch for clues. For example, someone who is too warm might repeatedly try to remove a blanket. You can remove the blanket and place a cool cloth on the person’s head.

Hunching their shoulders, pulling the covers up, and shivering can be signs the person is cold. Make sure there is no draft, raise the heat, and add another blanket. Avoid electric blankets because they can get too hot.

Fatigue. It is common for people nearing the end of life to feel tired and have little or no energy. Keep things simple. For example, a bedside commode can be used instead of walking to the bathroom. Providing a stool so the person can sit in the shower, or sponge baths in bed can also help.

Many practical jobs need to be done at the end of life — both to relieve the person who is dying and to support the caregiver. A person who is dying might be worried about who will take care of things when they are gone. A family member or friend can offer reassurance — "I'll make sure your African violets are watered," "Jessica has promised to take care of Bandit," "Dad, we want Mom to live with us from now on" — which may help provide a measure of peace. You also may remind the dying person that their personal affairs are in good hands.

Everyday tasks can also be a source of worry for someone who is dying and can overwhelm a caregiver. A family member or friend can provide the caregiver with a much-needed break by helping with small daily chores around the house such as picking up the mail, writing down phone messages, doing a load of laundry, feeding the family pet, or picking up medicine from the pharmacy.

Caregivers may also feel overwhelmed keeping close friends and family informed. A family member or friend can help set up an outgoing voicemail message, a blog, an email list, a private Facebook page, or even a phone tree to help reduce the number of calls the caregiver must make. Listed at the end of this article are some organizations that make setting up such resources easy and secure.

Providing comfort and care for someone at the end of life can be physically and emotionally exhausting. If you are a primary caregiver, ask for help when you need it and accept help when it's offered. Don't hesitate to suggest a specific task to someone who offers to help. Friends and family are usually eager to do something for you and the person who is dying, but they may not know what to do.

In the end, consider that there may be no “perfect” death so just do the best you can for your loved one. The deep pain of losing someone close to you may be softened a little by knowing that, when you were needed, you did what you could.

For people nearing the end of life, spiritual needs may be as important as their physical concerns. Spiritual needs may include finding meaning in one's life, ending disagreements with others, or making peace with life circumstances. The dying person might find comfort in resolving unsettled issues with friends or family. Visits from a social worker or a counselor may help.

Many people find solace in their faith. Others may struggle with their faith or spiritual beliefs. Praying, reading religious texts, or listening to religious music may help. The person can also talk with someone from their religious community, such as a minister, priest, rabbi, or imam.

Family and friends can talk to the dying person about the importance of their relationship. For example, adult children may share how their father has influenced the course of their lives. Grandchildren can let their grandfather know how much he has meant to them. Friends can share how they value years of support and companionship. Family and friends who can't be present in person can send a video or audio recording of what they would like to say, or a letter to be read out loud.

Sharing memories of good times is another way some people find peace near death. This can be comforting for everyone. Some doctors think that dying people can still hear even if they are not conscious. Always talk to, not about, the person who is dying. When you come into the room, identify yourself to the person. You may want to ask someone to write down some of the things said at this time — both by and to the person who is dying. In time, these words might serve as a source of comfort to family and friends.

There may come a time when a dying person who has been confused suddenly seems to be thinking clearly. Take advantage of these moments but understand that they are likely temporary and not necessarily a sign of getting better. Sometimes, a dying person may appear to see or talk to someone who is not there. Resist temptation to interrupt or correct them, or say they are imagining things. Give the dying person the space to experience their own reality. Sometimes dying people will report having dreams of meeting deceased relatives, friends, or religious figures. The dying person may have various reactions to such dreams, but often, they are quite comforting to them.

What to do after someone dies depends on where the person died. If someone dies at home, there is no need to move the body right away. If the person was in hospice, a plan for what happens after death will likely already be in place. If the person wasn’t in hospice, talk with the doctor, local medical examiner (coroner), local health department, or a funeral home representative about how to proceed. You might want to have someone make sure the body is lying flat before the joints become stiff. This rigor mortis begins sometime during the first few hours after death.

When a loved one passes, some people want to stay in the room with the body; others prefer to leave. Some families want time to sit quietly with the body, console each other, and maybe share memories. This is the time for any special religious, ethnic, or cultural customs that are performed soon after death.

If your loved one died in a facility, such as a hospital or nursing home, discuss any important customs or rituals with the staff early on, if possible. You could ask a member of your religious community or a spiritual counselor to come. If you have a list of people to notify, this is the time to call those who might want to come and see the body before it is moved.

Get a Legal Pronouncement of Death

As soon as possible, the death must be officially pronounced by someone in authority like a doctor in a hospital or nursing facility or a hospice nurse. This person also fills out the forms certifying the cause, time, and place of death. These steps will make it possible for an official death certificate to be prepared. This legal form is necessary for many reasons, including life insurance and financial and property issues.

Make Arrangements for After Death

If the person was in hospice, a plan for what happens after death will already be in place. If death happens at home without hospice, try to talk with the doctor, local medical examiner (coroner), your local health department, or a funeral home representative in advance about how to proceed. You can also consider a home funeral, which is legal in most states.

Arrangements should be made to pick up the body as soon as the family is ready and according to local laws. This can be done by a funeral home or by the family themselves in most states. The hospital or nursing facility, if that is where the death took place, may help with these arrangements. If at home, you will need to contact the funeral home directly, make arrangements yourself, or ask a friend or family member to do that for you.

The doctor may ask if you want an autopsy. This is a medical procedure conducted by a specially trained physician to learn more about what caused the death. For example, if the person who died was believed to have Alzheimer’s disease, a brain autopsy will allow for a definitive diagnosis. If your religion or culture objects to autopsies, talk to the doctor. Some people planning a funeral with a viewing worry about having an autopsy, but the physical signs of an autopsy are usually hidden by clothing and other body preparation techniques.

What to Do Within A Few Weeks of Death

Over the next few weeks, you may want to notify a few places about your loved one’s death. This may include:

• The Social Security Administration. If the deceased was receiving Social Security benefits, you need to stop the checks.
• Life insurance companies. You will need a death certificate and policy numbers to make claims on any policies.
• Credit agencies. To prevent identity theft, you will want to send copies of the death certificate to three major firms: Equifax, Experian, and TransUnion.
• Banks and financial institutions. If your loved one left a list of accounts and passwords, it will be much easier to close or change accounts. You will need a copy of the death certificate if the person did not leave a list.