At the end of life, each story is different. Death comes suddenly, or a person lingers, gradually failing. For some older people, the body weakens while the mind stays alert. Others remain physically strong, and cognitive losses take a huge toll. But for everyone, death is inevitable, and each loss is personally felt by those close to the one who has died.
End-of-life care is the term used to describe the support and medical care given during the time surrounding death. Such care does not happen just in the moments before breathing finally stops and a heart ceases to beat. An older person is often living, and dying, with one or more chronic illnesses and needs a lot of care for days, weeks, and sometimes even months.
When a doctor says something like, "I'm afraid the news is not good. There are no other treatments for us to try. I'm sorry," it may close the door to the possibility of a cure, but it does not end the need for medical support.
There are ways to make a person who is dying more comfortable. Discomfort can come from a variety of problems. For each there are things you or a health care provider can do, depending on the cause. For example, a dying person can be uncomfortable because of:
- Breathing problems
- Skin irritation
- Digestive problems
- Temperature sensitivity
Pain. Watching someone you love die is hard enough, but thinking that person is also in pain makes it worse. Not everyone who is dying experiences pain, but there are things you can do to help someone who does. Experts believe that care for someone who is dying should focus on relieving pain without worrying about possible long-term problems of drug dependence or abuse. 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 overwhelming pain is hard to manage. Try to make sure that the level of pain does not "get ahead" of pain-relieving medicines. If the pain is not controlled, ask the doctor or nurse to arrange for consultation with a pain management specialist.
Struggling with severe pain can be draining. It can make it hard for families to be together in a meaningful way. Pain can affect mood—being in pain can make someone seem angry or short-tempered. Although understandable, irritability resulting from pain might make it hard to talk, hard to share thoughts and feelings.
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. Worrying about the next breath can make it hard for important conversations or connections. Try raising the head of the bed, opening a window, using a vaporizer, or having a fan circulating air in the room. Sometimes, the doctor suggests extra oxygen, given directly through the nose, to help with this problem.
People very near death might have noisy breathing called a death rattle. This is caused by fluids collecting in the throat or by the throat muscles relaxing. It might help to try turning the person to rest on one side. There is also medicine that can be prescribed to help clear this up. But not all noisy breathing is a death rattle. And, it may help to know that this noisy breathing is usually not upsetting to the person dying, even if it is to family and friends.
Skin irritation. Skin problems can be very uncomfortable. With age, skin becomes drier and more fragile naturally, so it is important to take extra care with an older person's skin. Gently applying alcohol-free lotion can relieve dry skin as well as be soothing.
Dryness on parts of the face, such as the lips and eyes, can be a common cause of discomfort near death. A lip balm could keep this from getting worse. A damp cloth placed over closed eyes might relieve dryness. If the inside of the mouth seems dry, giving ice chips, if the person is conscious, or wiping the inside of the mouth with a damp cloth, cotton ball, or a specially-treated swab might help.
Sitting or lying in one position puts 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 from side to back and to the other side every few hours may help prevent bed sores. Or try putting a foam pad under an area like a heel or elbow to raise it off the bed and reduce pressure. A special mattress or chair cushion might also help. Keeping the skin clean and moisturized is always important. A bed sore that won't heal probably needs treatment by a wound specialist.
Digestive problems. Nausea, vomiting, constipation, and loss of appetite are common end-of-life complaints. The causes and treatments for these symptoms are varied, so talk to a doctor or nurse right away. There are medicines that can control nausea or vomiting or relieve constipation.
If someone near death wants to eat, but is too tired or weak, you can help with feeding. If loss of appetite is a problem, encourage eating by gently offering favorite foods in small amounts. Or try serving frequent, smaller meals rather than three big ones. But, don't force a person to eat. Going without food and/or water is generally not painful, and eating can add to discomfort. Losing one's appetite is a common and normal part of dying. A conscious decision to give up food can be part of a person's acceptance that death is near.
Temperature sensitivity. 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 take off the blanket and try a cool cloth on his or her head. If a person is hunching his or her shoulders, pulling the covers up, or even shivering—those could be signs of cold. Make sure there is no draft, raise the heat, and add another blanket, but 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 activities simple. For example, a bedside commode can be used instead of walking to the bathroom. A shower stool can save a person's energy, as can switching to sponging off in bed.
Medical testing and treatments. Medical tests and treatments can be uncomfortable and can drain the strength of a person who is dying. Some may no longer be necessary and can be stopped, as one woman's family learned. At 80, Catherine had already been in a nursing home for two years since her stroke. Her health began to fail quickly, and she was no longer able to communicate her wishes. Her physician, Dr. Jones, told her family she was dying. He said that medical tests, physical therapy, and IVs (intravenous tubes inserted into a vein with a needle to give medicine or fluids) were no longer really needed and should be stopped since they might be causing Catherine discomfort. Dr. Jones also said that checking vital signs (pulse, blood pressure, temperature, and breathing rate) was interrupting her rest and would no longer be done regularly.
Then Catherine developed pneumonia. Her family asked about moving her to the hospital. The doctor explained that Catherine could get the same treatment—antibiotics, if chosen, and oxygen—in the familiar surroundings of her nursing home. Besides, he said a move could disturb and confuse her. The family agreed to leave Catherine in the nursing home, and she died two days later surrounded by those close to her. Experts suggest that moving someone to a different place, like a hospital, close to the time of death, should be avoided if possible.
Death is inevitable. The best a caregiver can do is to help ensure their loved one passes with as little pain as possible and that their final wishes are carried out.