Journey s End: What to Expect and What to Do When Giving Care at the End of Life

Journey s End: What to Expect and What to Do Just as our lives take different paths, so do the ways we conclude those journeys. The end of life is as individual as the people around us. Many people aren t sure that they ll know what to do and whether they ll be able to manage in the final weeks of their loved one s life. Here we ll tell you about some of the things that often occur and that you may see, and we ll give you some suggestions for ways to comfort your loved one. Remember that Pathways Hospice is always just a phone call away. 1

Retreat from Activity and People Oftentimes, weeks or even months before a person s passing, he or she begins to communicate less and to withdraw from friends, family and surroundings. There may be less interest in visitors, TV, and other activities even from much loved family members. This decreased socialization may be an internal acceptance that the end of life is nearing. It may be part of your loved one s preparation to separate from this life. As the patient continues to retreat from the world, there will be more and more napping. Then more time is spent sleeping than awake, and eventually the person becomes difficult to wake. Near the end of life he or she may be unconscious; you are unable to wake them. When this turning inward begins there are some things you can do. Plan activities and visiting for times of day when your loved one seems most alert. Since hearing seems to remain until the very end, you can continue to reassure your loved one by talking to them in your usual tone of voice about what you re doing, how much you care, or things you want him or her to know. 2

It s a good idea to tell the patient what you are going to do before you do it. For example, Hi Alex, it s Maria and I m going to clean your mouth now. Remember not to say anything in front of the patient that you wouldn t say if the person were wide awake. Decreased Appetite There comes a time when nearly everyone who is very sick with a life-limiting illness loses their appetite, eats less, and eventually refuses food and water. Food symbolizes life and love and caring in all cultures. If we don t provide food, we may feel as though we are not doing all we can for our loved one. However, with advanced disease there is little desire or need for food. At this stage decline in appetite is normal. As body systems begin to wind down, so does the ability to digest foods. Flavors may start to taste different. Solid foods, especially meats, become unappetizing and too difficult to chew and digest. At some point, a person may prefer only liquids, and later, nothing at all. Sometimes people eat to make their caregivers feel better. For many, appetite comes and goes. 3

Allowing a loved one to refuse food is not starving him. Starvation occurs when an otherwise healthy person is hungry and food is not available. People nearing the end of life do not experience feelings of hunger that healthy people do. Let your loved one be the guide; he or she will let you know if he wants food or fluids. Offer food and fluids, but honor his or her refusal. If the person coughs and sputters when taking fluid or food, it may be time to stop trying to feed your loved one to prevent choking. The ability to swallow is lost near the end of life. You may want to talk to your Pathways Hospice nurse about this. People who can t speak will sometimes bite a straw or spoon, clamp their teeth closed, stash food in their cheeks, turn their heads to the side, or spit food out to let you know they don t want to eat. We can do no great things on this earth, only small things with great love. Mother Teresa 4

At about the same time a person begins to lose his appetite, you may see other changes more sleeping, periods of confusion, restlessness, and sometimes breathing changes. These are all part of the normal course at the end of life. Stopping eating does not cause these changes, but they often happen around the same time. Thirst By the time a person stops drinking, he or she is usually sleeping with an open mouth; this dries the mucous membranes. Your loved one may say he or she is thirsty, but doesn t really drink when water is offered. What we have learned is that people usually mean their mouths are dry. When we provide frequent mouth care (misting the mouth with water, wetting the tongue, and cleaning teeth and gums), they no longer complain of thirst. Feeding Tubes and IVs At a time when a person is naturally giving up fluids, using tube feedings and intravenous (IV) fluid may overload the body. This can cause uncomfortable symptoms such as swelling, shortness of breath (from fluid in the lungs), and increased saliva that can t be swallowed. Instead of making 5

the person feel better, these fluids may make your loved one feel worse. Feeding tubes do not necessarily prolong life, and they carry the added risk of aspiration pneumonia. This occurs when the liquid food is burped or bubbled up into the throat and is then breathed into the lungs. Disorientation As the body begins to shut down, changes happen that can make a dying person confused. Sometimes it becomes unimportant or difficult for the person to keep track of time and people. If the person simply forgets where he or she is, or forgets the date and is easily reoriented, gently remind him of where he is and the day, date, and time. If orienting the patient to the correct date or place agitates or upsets him, let it go. Some people seem disoriented to time in another way, sleeping during the day and awake at night. This may be caused by a fear of dying in one s sleep at night when no one will notice. It may seem safer to sleep when there are people around during the day. Or it may just be caused by too many daytime naps. 6

Pets may also help keep a person oriented. If there is a sudden disorientation, however, you should call your Pathways Hospice nurse. Confusion or Hallucinations Sometimes a person appears to be hallucinating seeing people and places that aren t visible to anyone else. Your loved one may have imaginary conversations, often with someone who has already died. At first glance you may think the patient is over-medicated or under-medicated, or that he is out of it. But if we listen carefully there may be meaningful messages in what sounds like rambling. The only way out of the desert is through it. African proverb 7

People nearing the end of life will sometimes talk about travel, as though they plan a journey. A person might ask about the bus schedule, whether the suitcase is packed, or if the road to the airport is open. This can actually be reassuring; it lets you know that your loved one is aware of the transition he or she will soon be making. Dying people occasionally seem to move seamlessly back and forth between this world and another. They may talk clearly to people that you know have already died, often close relatives or friends, and then turn and talk clearly to you. Another phenomenon is seeing a place that those in the room can t see. Or a patient may say he is ready to go home. At first you may want to answer, You ARE home. But the person is probably not talking about his or her physical, earthly home. Instead you may get a more meaningful response by asking, Are you ready to leave? or, Tell me about what is happening with you. There is no need to disagree or correct your loved one. These are normal experiences. There is no reason to speak louder than usual. If the patient is truly having hallucinations (like seeing bugs on the wall) the Hospice nurse can help. Adding or discontinuing medications can often relieve these symptoms. 8

Fever As the body becomes weaker, so does a person s internal thermostat. Often a person nearing death will have a slight fever. If it is less than 101 F., your loved one may not need any medication. A cool washcloth to the forehead and taking off a blanket may be all that s needed. If the fever is greater than 101 F., your nurse may suggest acetaminophen (Tylenol). As it lowers the temperature, the patient may perspire, and pajamas and sheets may need changing if they become damp. Your loved one may throw the covers off when the room seems comfortable to you. It s important to know that he or she may be warm even when you feel cool. Perhaps all that is needed now is a sheet and no blanket. Sometimes people become sweaty and clammy even without a fever. Hope is an orientation of the heart, of the spirit. It is not the belief that things will turn out well, but that things will make sense, however they turn out. Vaclav Havel 9

Incontinence Incontinence is the loss of control of the bowels or bladder that can sometimes occur as muscles in the lower body begin to relax. The overall caregiving goal is simply to keep the person clean, dry, and comfortable. Adult disposable briefs (these words may impart more dignity than saying diapers ) and under-pads on the bed may solve the problem. Your Pathways Hospice nurse or home health aide can show you how to change these for someone in bed. The nurse may suggest placing a catheter (a tube that drains into an enclosed plastic bag) into the bladder to keep the skin dry. A catheter is uncomfortable only for a few seconds while being placed. Then it generally isn t felt. People at the end of life make much less urine in the final few days, and the color is usually darker than normal. I am only one, but I am one. I cannot do everything, but still I can do something. Helen Keller 10

Restlessness During the last day or two of life some people become restless and fidget. Your loved one may make repeated motions or pick at the sheets or air. You can reassure your loved one that you are there and won t leave him or her. Speak slowly and calmly in a soothing way. Reading to the patient, playing soft music, or massaging the hands or feet may be a comfort. You can gently brush their hair or just hold hands. It is not necessary to restrain a restless patient, but you may need to use bed rails or have someone sit with the person if he or she is very restless. Continuing to give pain medication is important. Although your loved one may no longer be able to tell you if he or she is having pain, we must do what we can to be sure the person remains as pain-free as possible. Sometimes a dying person is worried about who will take care of things when he or she is gone. Offering reassurance I ll make sure your plants are watered and Frank will take care of the cat. Or, I love you and I will miss you so much, but I will be okay. I don t want you to worry. Anna will help me with the checkbook. This reassurance can be very calming. 11

Surge of Energy An unexpected increase in the level of energy is a phenomenon that you may see in someone who has been weak, disoriented, and withdrawn. Your loved one may unexpectedly seem more awake, may feel like eating, may want to visit, or may want to get out of bed things he hasn t done for days or weeks. This surge of energy is sometimes subtle. It may be the patient gathering all his or her physical strength for one last full, bodily experience in this earthly life. It s easy to see how this can give the impression that the person is getting better. Enjoy this time with your loved one for what it is another opportunity to communicate in a meaningful way. The human spirit is stronger than anything that can happen to it. C.C. Scott 12

Breathing Changes As a person begins to slip from one world to another, breathing patterns often begin to change. Breathing may slow down or there may be rapid shallow breaths followed by periods of no breathing. These periods can last 5 to 30 seconds, or even up to a full minute. These changes usually mean that death will occur within hours or days. Breathing with pauses is not uncomfortable for the patient; it simply means the end is nearing. There isn t anything you need to do about this. The nurse will instruct you in the use of medication if the breathing is very rapid or seems labored. When the end is very near, you may see very slight movement of the jaw with each breath, and a gasping quality to the breaths. Sometimes when a person is so weak that he can t swallow his own saliva, it gathers in the back of the throat and makes a noisy, wet, rattling sound. Turning the patient side-to-side every five or ten minutes and raising and lowering the head of the bed sometimes help to move these secretions so that they drain out of the throat. This loud breathing isn t hard for your loved one, but it is sometimes hard to listen to. 13

Your nurse may suggest medication you can give to dry excessive secretions. At this point the patient is usually breathing with his or her mouth open. This may make the mouth very dry and frequent mouth care is a great comfort. If the breathing seems especially labored, your doctor may prescribe low dose morphine. This is safe and eases the workload for the heart and lungs and you will see more relaxed breathing. Grief is the price of love. M.A. Schreder Slowing Circulation Another change that you will see when death is just hours or a day or so away, is the slowing of circulation to the point that arms and legs begin to feel cooler than usual. The hands, feet and knees may have a blotchy, mottled look. Parts of the body that the patient is lying on may be darker than the rest, and the patient may appear pale and have a bluish cast around the lips, on the ear lobes, and under the fingernails. 14

This state doesn t cause any discomfort for your loved one, although it is another sign that he or she will soon pass on. You may use a warm blanket, gently continue to change the person s position, and very softly massage or stroke your loved one. This is a time to reassuringly tell the person that you are there, and that he or she won t be left alone, that you will stay at his side. How Will You Know When Death Has Occurred? When your loved one has passed away you will see no breathing and feel no heart beat. There will be no response to your voice or touch. The eyes will be partly open and the pupils will be large and staring. The jaw will relax and the mouth will open. There may be loss of bowel and bladder contents. What to Do When Death Has Occurred Although you may have felt well prepared, when your loved one dies it may still feel like a shock. This isn t an emergency; it s what you have been expecting. There is no need to call 911. The police do not need to be notified. 15

This is the time you may want to call a friend or relative that you ve arranged to be with you. Please call Pathways. We encourage you to accept Pathways help. Hospice staff is available 24 hours a day to help you through this time. A nurse can remove equipment (like tubes), bathe the patient, and prepare the body if you wish. Pathways can call the doctor, dispose of medications, and call the mortuary for you if you wish. Even if you don t want a nurse or social worker to visit, please call Pathways to let us know what has happened. We will call the coroner if it is necessary. You and your family can decide when you would like the mortuary to come. There is no hurry. It isn t necessary for the body to be removed immediately. When you come to the edge of all the light, and you know you are about to step off into the darkness of the unknown, faith is knowing one of two things will happen: either there will be something solid to stand on, or... you will be taught how to fly. Patrick Overton 16

It s okay to keep the body in the home for several hours. You may want time to sit and say goodbye, or need time for other relatives to come. Let the mortuary know when you are ready for them to come. Many people leave the room while the mortuary removes the body, but you may help if you wish, whichever feels right. The mortuary will let you know about making arrangements for services. This is all you have to do right now. Let others help you. Don t forget to eat. Don t be surprised if you have feelings of confusion, fear, numbness, anger, sadness, or relief. These are normal responses. Try to rest when you can. Now is the time to take care of your self. Support Pathways Hospice provides bereavement support for those who have lost a loved one. You may want to take advantage of Pathways support groups, remembrance and memorial services, counseling, newsletters and check-in calls. Your grief is just that your grief. Each of us grieves differently. There is no right or wrong way to grieve and no typical time frame for grieving. And if you feel you need support during this time, Pathways is here for you. 17

They are not dead who live in the hearts they leave behind. Tuscarora saying End-of-Life Timeline There is no set timeline for how life ends; for some it comes quickly, others may linger. There are many factors that affect when life will end. Among them are: the aggressiveness of the disease, whether the patient has expressed a readiness to die, and how long he or she has gone without food and fluids. However, the following timeline is somewhat typical. Six To Eight Weeks Retreat from people and activities Decreased appetite Increased fatigue and weakness More time spent sleeping One To Two Weeks Confusion or disorientation Sleeping most of the time Decreased blood pressure Great weakness Talking to people not present Eating and drinking very little 18

Last Few Days Less urine, darker color Pauses in breathing Surge of energy Restlessness, agitation Incontinence Difficulty waking Clammy skin No eating or drinking Little if any communication Hours Slight jaw movement with each breath Cold, blotchy hands and feet No pulse felt in the wrist Rattling noise with each breath Little or no communication Waxy, pale skin; bluish color around the lips Minutes Slowing, gasping breaths Very slow heart rate No response to voice or touch Glassy, unseeing eyes Darkening of parts of the body resting on bed When Death Has Occurred No breath or pulse Large, fixed pupils of the eyes Relaxed, open jaw Release of a small amount of urine or stool Muscle spasm or movement 19

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The printing of this guide was made possible through generous donations to Pathways Hospice Foundation, the philanthropic branch of the Pathways Family of Services. For more information about Pathways Hospice Foundation, please call 408.730.1200 or visit www.pathwayshealth.org.

When it s time for hospice care, remember you re not alone... we re always here to help. 1.888.755.7855 www.pathwayshealth.org Community based, not for profit