Care at the End of Life

Overview

You will face many hard decisions as you near the end of life. These include:

What kind of medical care you want.

For example, do you want cardiopulmonary resuscitation (CPR) if your heart stops? Or do you want to be on a breathing machine to help you breathe if you can't breathe on your own? Write down your wishes in your living will.

Where you would like to receive care.

Some people would rather be cared for in a hospital. Others choose to be cared for at home or in a nursing home.

Who will make decisions about your care.

Be sure to name someone to be your health care agent (health care proxy, health care surrogate). This person can make decisions for you if you can't make them for yourself.

Whether you want to donate your organs.

After your death, you may be able to donate certain organs depending on their condition.

Look for chances to talk about your end-of-life choices early and often. You could bring up the subject while you write your will. Or you could talk with loved ones after a doctor's visit or at a family gathering. Planning ahead will help you and your loved ones make hard decisions when the time comes.

Deciding About Care at the End of Life

You will face many hard decisions as you near the end of life. These include:

• What kind of medical care you want.
• Where you would like to receive care.
• Who will make decisions about your care if you can't speak or make decisions for yourself.
• Whether you want to donate your organs after you die.

What kind of medical care you want

Several things may affect your decision about the kind of care you want. These include:

• Your illness. If you are diagnosed with a serious illness, treatments that try to cure your disease may be available. Other serious illnesses can't be cured but can be managed well for many years. And some illnesses are more aggressive and life-limiting.
• Your treatment options. Many treatment options offer the chance of curing a disease with little effect on your quality of life. Other treatments may prolong your life. But they may have side effects that really affect your quality of life.
• Your age and other health problems. Older people with multiple health problems may choose care that focuses on keeping them comfortable rather than keeping them alive as long as possible.

Depending on your illness, different types of treatment may be available. They include:

Life-sustaining treatments.

Discuss with your loved ones and doctor how you feel about life-sustaining treatment.

You may have to make tough choices about whether you want:

• Cardiopulmonary resuscitation (CPR) if your heart stops.
• To be on a breathing machine (ventilator or respirator) to help you breathe if you can't breathe on your own.
• Dialysis to clean your blood if your kidneys stop working.
• A feeding tube or an intravenous (I.V.) line to provide food and fluids if you can't eat or drink. This is known as artificial hydration and nutrition.
• To turn off a heart device, such as a pacemaker or an implantable cardioverter-defibrillator (ICD).

Talk to your doctor about your illness, specific treatment options, and chances for recovery. Your family is a key part of this process. Discuss your options with them. Clearly state your wishes. Some people who are facing death have strong and definite feelings about CPR and other life-sustaining treatments. For those people, the decision for or against life support may be easy. For other people, this decision is very hard.

Palliative care.

Some people choose palliative care. This does not try to cure your illness. It looks at ways to make you more comfortable. It can help you manage symptoms, pain, or side effects from treatment. It can also help you cope with your feelings about living with a serious illness. Palliative care may be used along with curative treatment.

Hospice care.

Hospice is a type of palliative care. But it's for people who are close to the end of life and are not likely to live for more than 6 months. It provides medical treatment to relieve symptoms. The goal is to keep you comfortable, not to try to cure your disease. Hospice care also offers emotional help and spiritual support.

Where you would like to receive care

There are several places you can choose to receive care. Your choices may be limited by your medical coverage or what you can afford to pay. These places include:

• A hospice center.
• Your home.
• A nursing home. This may be the best option if you need more skilled care than can be provided at home. It may also be a good choice if a family member is not able to care for you.
• An assisted-living facility. This is a popular alternative to nursing homes for people who can provide most of their own care.

Who will make decisions about your care

By completing an advance directive that includes a living will and a medical power of attorney, you can help ensure that your wishes will be respected if you can't speak for yourself.

A living will (also called a declaration) is a legal document. It states your wishes for medical care if you can't speak or make decisions for yourself. A medical power of attorney (also called a durable power of attorney for health care) lets you choose a health care agent (also called a health care proxy or health care surrogate). This person can make treatment decisions for you if you can't make them for yourself, not only at the end of your life but anytime you can't speak for yourself.

Whether you want to donate your organs

Many people need organ transplants because of medical conditions such as kidney failure, cornea disease, or heart failure. After your death, you may be able to donate certain organs. It depends on their condition. Talk to your doctor about whether your illness allows you to be an organ donor.

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Talking to Your Doctor

It's important to talk with your doctor about your preferences and concerns about care at the end of life. Likewise, you should expect your doctor to talk openly and sensitively with you and your loved ones. Your doctor can provide information, answer questions, and advise you. But the decisions are yours.

Important questions to ask your doctor include:

• What is my diagnosis?
• What are my treatment options? What are the side effects?
• What might happen if I choose not to treat my illness?
• How soon do I need to make a decision about which treatment to use (or to not use)?
• Should I take an antibiotic to treat an infection?
• Can I stop taking medicines that treat other conditions?

Other questions to ask your doctor include:

• How long do you think I have to live?
• When will we talk about hospice care?
• How will my illness and treatment affect things such as:
  • My relationship with my friends and family?
  • My ability to do the things that are important to me, like traveling and hobbies?
  • Where I live?

To get the most out of an appointment with your doctor:

• Listen carefully to what your doctor says. Make sure you understand what you are told about any diagnosis or treatment.
• Ask questions. If you don't understand something your doctor says, ask your doctor to repeat it in a different way.
• Be honest. If a suggested treatment doesn't fit with your values or beliefs, or if it raises fears or concerns, talk with your doctor about it. Other treatment options may be available.
• Ask for instructions. Before you leave your doctor's office, make sure you know what you are supposed to do to care for yourself. Ask for written information or instructions.

Prepare for your appointments by writing down your questions and concerns. Take your written list to your appointment. It will help you remember to address the important issues.

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The Dying Process

Several physical and emotional changes occur as death nears. Here are some things you can expect. If you have any questions or concerns, talk to your doctor. The more you know, the better prepared you'll be to cope with what is happening.

Emotional and spiritual changes

As death nears, you may feel like being social. You may want to see and connect with people. But it's also common for people to become less interested in the outside world and the specific details of daily life, such as the date or time. You may turn more inward and be less socially involved with others.

You may spend time thinking about people who have already died. Events in the recent past may become mixed with memories from your distant past. You may remember events from years long gone in vivid detail. But you may not remember what happened even an hour earlier.

Facing the end of your life may also cause you to confront your own spiritual questions and issues. Think about what provides comfort and support to you. Don't hesitate to ask for support from friends, family, hospice, or spiritual advisors.

Physical changes

Some of the common physical changes you may experience include:

• Appetite changes. You probably will eat and drink less, or not at all, as death nears. Changes in your metabolism mean that you don't need the same amount of food and fluids that you needed before. You can be offered small sips of fluid or small bites of food as long as you are alert and able to swallow.
• Breathing changes. You may breathe faster or slower. As death nears, your breathing may be moist and noisy. Breathing changes commonly occur when you are weak, and normal secretions in your airways and lungs can collect. Sometimes people feel short of breath. A doctor can prescribe medicines or other therapies to help make sure that these breathing changes aren't uncomfortable.
• Increased weakness and sleepiness. General weakness is common at the end of life. It's not unusual to need more help to walk, bathe, and use the toilet. Later, you may need help turning over in bed. As death nears, you may sleep more and may be harder to wake up. You may enter a stage called a coma, when you do not wake up or respond at all. When you are in a coma, all physical needs (such as bathing, turning, and bowel and bladder care) will be taken care of by someone else.
• Urinary and bowel changes. You will make less urine as death nears. What you do make may be dark brown or dark red. Stools (feces) may be hard and difficult to pass (constipation) as your fluid intake decreases and you get weaker. Medicines (like stool softeners or laxatives) or an enema can help. As you become weaker, you may lose control of your bladder and bowels. Disposable pads and underwear can be supplied by a hospice program or bought at a drugstore. And if needed, a urinary catheter can be placed in your bladder to continuously drain your urine.
• Vision changes. As you near death, you may notice that you can't see well.

Mental changes

As death nears, you may start to see or hear things that no one else does. You may also become agitated, or be more or less alert at different times. This is known as delirium. Your caregiver will tell a doctor or hospice worker if you're having delirium. Medicine can be prescribed to help keep you calm and comfortable.

Managing pain

The goal of good pain management is to have the least possible pain with the fewest side effects. Because each person responds to pain medicines in a different way, it may take more than one try to find the best medicines for you.

If your pain isn't severe, nonprescription medicines may help relieve it. These include acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin and ibuprofen.

If these medicines don't help, your doctor may prescribe medicines called opioids. Opioids may be used with other medicines, such as NSAIDs or antidepressants, to treat your pain.

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Support for Caregivers

If you are caring for a dying loved one, it is important to take good care of yourself also. When you know that a loss is approaching, especially if you are able to participate in the care of a loved one who is dying, you may be better able to recognize and deal with your feelings of grief.

It is important that you get support to help you care for your loved one as well as to help you prepare for your loss.

Taking care of yourself

When you're caring for someone who is nearing the end of life, it can be easy to think less about your own needs. But to be a good caregiver, you have to take care of yourself first.

Try to eat well, get exercise, and do what you can to get enough rest. Take breaks, and take time to do things for yourself. Don't be afraid to ask for or accept help from others.

Consider joining a caregiver support group. Talking to people who are having a similar experience can really help. And support groups can connect you to resources for help in your community.

Finally, be gentle with yourself. It's common to have a range of emotions during this time. If you want to talk, seek out close family members, friends, or spiritual advisors. Hospice can provide emotional support too. Counseling can also help you process your feelings and cope with grief.

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After Death

Autopsy

An autopsy is a thorough medical exam of a body after death. It may be done to learn about a disease or injury. Or it may be done to find out how or why a person has died.

An autopsy is done by a doctor called a pathologist. This type of doctor is an expert in examining body tissues and fluids.

Family members may ask for an autopsy to be done after a loved one has died. This is called a requested autopsy. Sometimes an autopsy is required by law. This is called a required autopsy.

Grieving the death of a loved one

Grief is a natural response to the loss of someone or something very important to you. The loss may cause sadness and may cause you to think of very little else besides the loss. The words sorrow and heartache are often used to describe feelings of grief.

Grieving is the process of emotional and life adjustment you go through after a loss. Grieving after a loved one's death is also known as bereavement.

Grieving is a personal experience. Depending on who you are and the nature of your loss, your process of grieving will be different from another person's experience. There is no "normal and expected" period of time for grieving.

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