Care at the End of Life

Important Decisions

Many important decisions can be made about the care you want to receive at the end of life while you are active and able to communicate your wishes. By making arrangements in advance, valuable time can be used to spend time with loved ones.

Communicating your health care decisions

By completing an advance directive, which documents your health care preferences, you can help ensure your wishes will be respected if you become unable to communicate for yourself.

An advance directive can always be changed as your personal needs and goals change. Advance directives include:

• A living will, which is a legal document that expresses your wishes for medical care if you become unable to speak or make decisions for yourself. It allows you to keep control over your medical treatment decisions at the end of life. Check the laws governing living wills in your state. When considering some of the more difficult end-of-life decisions, it may help to think about what kinds of medical procedures you would or would not want.
• A medical power of attorney (or durable power of attorney for health care), which allows you to legally appoint a health care agent (also called a health care proxy) to make medical treatment decisions for you, not only at the end of your life but any time you are unable to speak for yourself. You can and should make decisions about your medical treatment for as long as you are able to make and communicate them. But when this is not possible, your health care agent can use both the written information in your living will as well as what he or she knows about you personally to make decisions about your medical treatment.

For more information on choosing a health care agent and writing an advance directive, see:

• Writing an Advance Directive.
• Choosing a Health Care Agent.

Organ donation

Organ donation is another important decision to consider at the end of life. 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 depending on their condition. Talk to your doctor about whether your illness allows you to be an organ donor.

If you choose to donate, your organs may be distributed to one or more people, based on blood and tissue type, the severity of the recipient's medical condition, how long the recipient has been waiting, and geographical location.

If you are interested in donating, you can indicate this on an organ donor card, a witnessed document that states your desire to donate your organs. On this card, you can specify which organs you wish to donate, or you can choose to donate any organ that is needed at the time of your death. Many states allow people to designate on their driver's licenses their wishes regarding organ donation.

People under the age of 18 must have a parent's or guardian's consent to donate organs.

Even if you complete a donor card or indicate your wishes on your driver's license, it is important to discuss your decision with your family. After your death, your family may be asked to give consent prior to donating your organs. For this reason, it is important to involve your family.

Organ donation will not disfigure your body, nor will it interfere with your funeral, including plans for an open casket funeral. You and your family will not be responsible for the costs associated with organ donation?those costs are paid by the person who receives the organ.

Estate planning

As you make end-of-life decisions, an attorney can advise you on how best to organize your estate so your family can handle your affairs after your death. Also, a financial planner or social worker may be available in your community or through a local hospital or hospice program. If your finances are limited, some attorneys and accountants offer services at a reduced rate or at no cost (pro bono).

Estate planning may include:

• Writing a will. If you already have a will, it may need to be updated. If you do not make your wishes known in a will, your state law may dictate what happens to your property when you die. Generally, property is distributed to a spouse, to children, or if there is no spouse or children, to other relatives. If no relatives can be found, your property may be taken by the state. Consider appointing a person to oversee your property after your death. This person is called an executor. After you write your will, keep it in a safe place, and let your executor and close family members know where it can be found.
• Appointing someone to make financial decisions for you in the event you are unable to do so.
• Choosing one or more people to care for your minor children (guardianship). A guardianship is a legal arrangement in which an adult has the court-ordered authority and responsibility to care for a child under the age of 18 or for an incapacitated adult.
• Ensuring your records are in a safe, accessible place. Documentation of a life insurance policy, pension, retirement account, or annuity should be stored in a safe place, along with bank account information, deeds to real estate, or investment information. Close family members, the executor of your estate, and your attorney should know where this information is kept.

Choosing the care you want

When you are diagnosed with a terminal illness, it can be difficult to know whether you should focus on treatment to cure your condition or prolong your life or on palliative care to relieve pain and maintain comfort. For more information on treatment to relieve pain and maintain comfort, see the topic Palliative Care.

Several factors may impact your decision about the kind of care you want, including:

• Your illness. If you are diagnosed with a serious illness, curative treatment options may be available. Certain diseases, such as skin cancer, testicular cancer, and cervical cancer, are often cured with appropriate medical treatment. Other serious illnesses, such as diabetes and AIDS, cannot be cured but can be managed successfully for many years. And some illnesses are more aggressive and life-limiting.
• Your treatment options. Many medical treatment options offer the chance of curing a disease with little effect on the quality of your life. Other treatments may prolong your life but may be associated with side effects that drastically decrease the quality of your life.
• Your age and other health conditions. Older people with multiple health problems may be more likely than healthier younger people to choose care that focuses on keeping them comfortable rather than keeping them alive as long as possible.

For more information on making the decision to stop curative treatments, see:

Should I stop life-prolonging treatment?

Talking to your doctor

When you are diagnosed with a terminal disease or condition, it is important to communicate your preferences and concerns clearly with your doctor. Likewise, you should expect your doctor to communicate openly and sensitively with you and your loved ones. Your doctor can provide information, answer questions, and advise you. But the decisions are yours.

Gather as much information about your disease as possible. If you do not understand what is being said, ask questions until you do. It may be helpful to write down your questions prior to your appointment. Important questions to ask your doctor include:¹

• What is my diagnosis?
• What are my treatment options? What are the side effects of these treatments?
• What do you think will happen if I choose not to treat my illness?
• How long do you think I have to live?
• How soon do I need to make a decision about which treatment to use (or to not use)?
• How will my illness and care affect my loved ones?

Explore all of the possibilities with your doctor and your loved ones. Some days, you will feel better emotionally and physically than others.

There may be times when you have difficulty understanding your doctor. Sometimes good communication is difficult, especially when end-of-life issues are the focus. You may be frustrated if you feel your doctor is not communicating openly with you or is avoiding your questions. Understanding why these problems sometimes occur may decrease your frustration and help you to think of ways to improve communication.

Communicating bad news to a person is always difficult. Your doctor may have provided care to you for a long time, and perhaps he or she feels very close to you. Remember that your doctor is human, and although you want to know as much as possible about your illness, your doctor cannot predict exactly how and when your life will end. A recent study showed that the better a doctor knows a patient, the more likely the doctor is to overestimate the patient's life expectancy and to delay end-of-life care.² Doctors may overestimate survival time because they do not want to believe that a patient they feel close to is not doing well. It may be helpful to see another doctor who can give you a second medical opinion.

Some doctors have a difficult time talking to their patients about issues at the end of life because they view death as their own failure. Doctors have been trained to cure illnesses and save lives, so some may feel they have failed their patients. Communicate your goals clearly and directly.

Until recently, medical schools in the United States did not teach about care at the end of life. As a result, many doctors may have difficulty talking to dying people. As more medical schools address care at the end of life in their curriculum, many doctors will learn to communicate more skillfully with their dying patients. Seeking help from others (such as a support group for people with life-limiting illnesses) may help you through this difficult emotional time.

Some doctors feel they are not providing the best possible care unless they offer the most technologically advanced treatment, such as mechanical ventilation. Some doctors fear they may be sued for malpractice if high-tech treatments are not offered, even in situations in which death is certain. The best way to avoid unwanted medical treatments at the end of your life is to think about what treatments you do and don't want, communicate your thoughts clearly and directly, and record your wishes in writing through an advance directive.

Your illness may prevent you from feeling well enough to talk to your doctor. Also, your doctor may explain the situation in terms that are difficult for you to understand. You may find it helpful to take along a family member or a friend to your medical appointments. Another person can help you listen as your disease and treatment options are explained to you. Don't hesitate to take notes, if this is helpful for you. And it's also okay to ask your doctor to slow down, if needed.

Don't be afraid to raise spiritual issues with your doctor, especially if you have religious beliefs that affect your treatment choices. Although you cannot expect your doctor to resolve your spiritual issues, discussing them may help your doctor better understand your emotional needs.

Limited time with a doctor has always been a concern of patients (and doctors). Prepare for your appointments by writing down your questions and concerns and taking this paper to your appointment. This will help you remember to address the important issues. If a family member or friend is going with you to your medical appointment, rehearse with that person what you want to cover during your appointment.

As your illness progresses, you may become too ill to continue seeing your doctor at a clinic or to talk on the telephone. If you wish to be at home as you die, it is helpful to designate only one family member or friend to communicate with your doctor. Choosing one reliable person to relay messages will help avoid the confusion caused by several people trying to communicate with your doctor.

Aggressive life-sustaining medical treatment

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

Tough choices include whether you want cardiopulmonary resuscitation (CPR) performed on you if your heart stops. If you stop breathing, a ventilator or respirator may be used to mechanically breathe for you. Although mechanical ventilation can prolong your life, your remaining days may be spent in the intensive care unit of a hospital connected to life-support equipment. You may not be fully alert and may not be able to speak.

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

For more information on this decision, see:

Should I receive CPR and mechanical ventilation?

Artificial hydration and nutrition

Another important treatment issue to consider is whether you want intravenous, or IV, lines or feeding tubes to be used if you are no longer able to take food or fluids by mouth. This is known as artificial hydration and nutrition. An IV is a needle placed in your vein through which fluids, liquid nutritional supplements, or medicines can be given. A feeding tube can be either a tube inserted into the stomach through the nose (nasogastric, or NG, tube) or a tube surgically inserted through the abdomen into the stomach (gastrostomy or PEG tube, or g-tube). As with an IV line, liquid nutritional supplements, fluids, or medicines can be given through a feeding tube. A third form of artificial hydration, hypodermoclysis, involves the injection of fluids directly into tissues beneath the skin (subcutaneous).

Changes in your body in the final weeks of life reduce your need for food and water. You will likely not be thirsty or hungry. You may feel better without artificial hydration or nutrition.³

Talk to your doctor if you are considering artificial hydration and nutrition. Making a plan for IV fluids and feeding tubes early in the course of your illness may be helpful if you are faced later on with the decision to pursue or forgo these treatments. Remember to communicate your wishes clearly with your family and your doctor.

For more information on this decision, see:

Should I receive artificial hydration and nutrition?

Kidney dialysis

Deciding when to stop kidney dialysis can be a difficult decision for people with kidney failure. A person with kidney failure needs dialysis or a kidney transplant to sustain life. Kidney failure often occurs after kidney damage has been present for 10 years or more. It usually is caused by a chronic disease, such as chronic renal disease or diabetes, that slowly damages the kidneys and reduces their function over time.

Although dialysis sustains life, it is not a cure for kidney failure. In the United States, 1 out of 4 people with kidney failure chooses to stop dialysis and receive palliative care only.⁴ Having kidney disease means making difficult choices. Many people with kidney failure live active, productive lives while having regular dialysis treatment. But others do not feel as healthy and struggle with the complications of dialysis.

For more information on this decision, see:

Should I stop kidney dialysis?