Providing Comfort and Care for End of Life
Make a loved one as comfortable as possible in their final days
Comfort care is an essential part of medical care at the end of life.
It is care that helps or soothes a person who is dying.
The goal is to prevent or relieve suffering as much as possible while respecting the dying person’s wishes.
Generally speaking, people who are dying need care in four areas—physical comfort, mental and emotional needs, spiritual issues, and practical tasks. In this chapter you will find a number of ways you can be of help to someone who is dying. Always remember to check with the health care team to make sure these suggestions are appropriate.
Eliminate problems to create more comfort
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 pain, breathing problems, skin irritation, digestive problems, temperature sensitivity or fatigue.
- 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 (disp-NEE-uh). 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 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.
Communicate with your loved one through talk, touch
Complete end-of-life care also includes helping the dying person manage any mental and emotional distress. Someone nearing the end of life who is alert might understandably feel depressed or anxious. Encouraging conversations about feelings might be beneficial. You might want to contact a counselor, possibly one familiar with end-of-life issues. If the depression or anxiety is severe, medicine might provide relief.
A dying person might 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. This feeling can be made worse by the understandable reactions of family, friends, and even the medical team. For example, when family and friends do not know how to help or what to say, sometimes they stop visiting. Or, someone who is already beginning to grieve may withdraw. Doctors may become discouraged because they can’t cure their patient and feel helpless. Some seem to avoid a dying patient. This can add to a dying person’s sense of isolation. If this appears to be happening, try to discuss your concerns with the family, friends, or the doctor.
The simple act of physical contact—holding hands, a touch, or a gentle massage—can make a person feel connected to those he or she loves. It can be very soothing. Warm your hands by rubbing them together or running them under warm water.
Try to set the kind of mood that is most comforting for the dying person. What has he or she always enjoyed? For example, Bill loved a party, so it was natural for him to want to be surrounded by family and friends when he was dying. Ellen always preferred spending quiet moments with one or two people at a time, so she was most comfortable with just a few visitors. Some experts suggest that when death is very near, music at low volume and soft lighting are soothing. In fact, near the end of life, music therapy might improve mood, help with relaxation, and lessen pain. Listening to music might also evoke memories those present can share. For some people, keeping distracting noises like televisions and radios to a minimum is important.
Finding peace through spirituality
People nearing the end of life may have spiritual needs as compelling as their physical concerns. Spiritual needs involve finding meaning in one’s life and ending disagreements with others, if possible. The dying person might find peace by resolving unsettled issues with friends or family. Visits from a social worker or a counselor may also help. Many people find solace in their faith. Praying, talking with someone from one’s religious community (such as a minister, priest, rabbi, or Muslim cleric), reading religious text, or listening to religious music may bring comfort.
Family and friends can talk to the dying person about the importance of their relationship. For example, adult children can 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 relate how they value years of support and companionship. Family and friends who can’t be present could send a 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 it is possible that even if a patient is unconscious, he or she might still be able to hear; it is probably never too late to say how you feel or to talk about fond memories.
Always talk to, not about, the person who is dying. When you come into the room, it is a good idea to identify yourself, saying something like “Hi, Bob. It’s Mary, and I’ve come to see you.” Another good idea is to have someone write down some of the things said at this time—both by and to the one dying. In time, these words might serve as a source of comfort to family and friends. People who are looking for ways to help may welcome the chance to aid the family by writing down what is said.
There may come a time when a dying person who has been confused suddenly seems clear-thinking. Take advantage of these moments, but understand that they might be only temporary, not necessarily a sign he or she is getting better.
Pick up the loose ends to give everyone a break
There are many practical jobs that need to be done at the end of life—both to relieve the dying person and to support the caregiver. Everyday tasks can be a source of worry for someone who is dying, and they can overwhelm a caregiver. Taking over small daily chores around the house—such as answering the door, picking up the mail or newspaper, writing down phone messages, doing a load of laundry, feeding the family pet, taking children to soccer practice, picking medicine up from the pharmacy—can provide a much needed break for caregivers.
A dying person might be worried about who will take care of things when he or she is gone. Offering reassurance might provide a measure of peace. Reminding the dying person that his or her personal affairs are in good hands can also bring comfort.
Everyone may be asking the family “What can I do for you?” It helps to make a specific offer. Say to the family “Let me help with ...” and suggest something like bringing meals for the caregivers, paying bills, walking the dog, or babysitting. If you’re not sure what to offer, talk to someone who has been through a similar situation. Find out what kind of help was useful. If you want to help, but can’t get away from your own home, you could schedule other friends or family to help with small jobs or to bring in meals. This can allow the immediate family to give their full attention to the dying person.
If you are the primary caregiver, try to ask for help when you need it. Don’t hesitate to suggest a specific task to someone who offers to help. Friends and family are probably anxious to do something for you and/or the person who is dying, but they may be reluctant to repeatedly offer when you are so busy.
Setting up a phone tree or computer listserv for the family to contact friends and other relatives can reduce the number of calls to the house. A listserv is a way to send the same message to a large group of people through email. Some families set up a website where they can share news, thoughts, and wishes. These can all save close family members from the emotional burden of answering frequent questions about how their loved one is doing.
Decades ago, most people died at home, but medical advances have changed that. Today, most Americans are in hospitals or nursing homes at the end of their lives. Some people enter the hospital to get treated for an illness. Some may already be living in a nursing home. Increasingly, people are choosing hospice care at the end of life.
There is no “right” place to die. And, of course, where we die is not usually something we get to decide. But, if given the choice, each person and/or his or her family should consider which type of care makes the most sense, where that kind of care can be provided, whether family and friends are available to help, and, of course, how they will manage the cost.
Around-the-clock care at hospitals, nursing homes
In a hospital setting, there is always medical staff available who know what needs to be done for someone who is dying. This can be very reassuring for that person, as well as for family and friends.
More and more people are in nursing homes at the end of life. In a nursing home, nursing staff is also always present. A nursing home, sometimes called a skilled nursing facility, has advantages and disadvantages for end-of-life care. Unlike a hospital, a doctor is not in the nursing home all the time. But, plans for end-of-life care can be arranged ahead of time, so that when the time comes, care can be provided as needed without first consulting a doctor. If the dying person has lived in the facility for a while, the staff and family have probably already established a relationship. This can make the care feel more personalized than in a hospital. As in a hospital, privacy may be an issue. You can ask if arrangements can be made to give your family more time alone when needed.
A familiar place for the last days
Home is likely the most familiar setting for someone who needs end-of-life care. Family and friends can come and go freely. Care at home can be a big job for family and friends—physically, emotionally, and financially. But, there are benefits too, and it is often a job they are willing to take on. Hiring a home nurse is an option for people who need additional help.
In order to make comfort care available at home, you will have to arrange for services (such as visiting nurses) and special equipment (like a hospital bed or bedside commode). Health insurance might only cover these services or equipment if they have been ordered by a doctor. Work with the doctor to decide what is needed to support comfort care at home. If the dying person is returning home from the hospital, sometimes a hospital discharge planner, often a social worker, can help with the planning.
A doctor has to be available to oversee the patient’s care at home—he or she will arrange for new services, adjust treatment, and order medicines as needed. It is important to follow the doctor’s plan in order to make the dying person as comfortable as possible. Talk with the doctor if you think a treatment is no longer helping.
Palliative care and hospice
Doctors can provide treatment to seriously ill patients in the hopes of a cure for as long as possible. These patients also receive symptom care or palliative care. For example, in time George developed anemia along with his heart failure. Managing the anemia can improve some of the symptoms troubling George. It might also make it easier for him to do things like get dressed or bathe on his own. Treating his anemia is part of palliative care.
Recently, the term palliative care has come to mean more than just treating symptoms. In the United States, palliative care now often refers to a comprehensive approach to improving the quality of life for people who are living with potentially fatal diseases. It provides support for family members, very similar to the more familiar concept of hospice care.
In a palliative care program, a multidisciplinary health care team works with both the patient and family to provide any support—medical, social, and emotional—needed to live with a possibly fatal illness. The health care team may be made up of doctors, nurses, therapists, counselors, social workers, and others as needed.
Palliative care can be provided in hospitals, nursing homes, outpatient palliative care clinics, certain other specialized clinics, or at home. Medicare covers some of the treatments and medicine. Veterans may be eligible for palliative care through the Department of Veterans Affairs. Private health insurance might pay for some services. Health insurance providers can answer questions about what they will cover.
In palliative care, you aren’t asked to make a choice between treatment that might cure a terminal disease and comfort care. In time, if the doctor believes the patient is not responding to treatment and is likely to die within 6 months, there are two possibilities. Palliative care could transition to hospice care. Or, the palliative care could continue, with increasing emphasis on comfort care and less focus on medical treatment aimed at a cure.
At some point, curative medical treatment may no longer make sense—it might not help or may actually make the patient more uncomfortable. Hospice is designed for this situation. The patient beginning hospice care understands that his or her illness is not responding to medical attempts to cure it or to slow the disease’s progress. The hospice approach to end-of-life care is similar to palliative care, in that it provides comprehensive comfort care to the dying person as well as support to his or her family, but, in hospice, attempts to cure the person’s illness are stopped.
Hospice is an approach to care, and so it is not tied to a specific place. It can be offered in two types of settings—at home or in a facility such as a nursing home, hospital, or even in a separate hospice center. Hospice care brings together a team of people with special skills—among them nurses, doctors, social workers, spiritual advisors, and trained volunteers. Everyone works together with the person who is dying, the caregiver, and/or the family to provide the medical, emotional, and spiritual support needed. A member of the hospice team visits regularly and is always available by phone—24 hours a day, 7 days a week.
It is important to remember that stopping treatment specifically aimed at curing an illness does not mean discontinuing all treatment. A good example is an older person with cancer. If the doctor determines that the cancer is not responding to chemotherapy and the patient chooses to enter into hospice care, then the chemotherapy will stop, but other medical care may continue. For example, if the person has high blood pressure, he or she will still get medicine for that.
Based on content from the National Institute on Aging booklet "End of Life: Helping with Comfort and Care."