What to Expect
A Compassionate Guide to the End of Life
presented by
Introduction The end of life is a normal and natural process. Taking some of the mystery out of this process can help reduce anxiety and fears. This guide describes the common signs that people can exhibit as they approach the end of life. However, we cannot predict the presence, the speed, or the order of the processes described. Each individual experiences the end of life in his or her own way, and on his or her own timeline. You may observe some, all, or even none of these signs, and the sequence and intensity is unique for every person. Throughout the course of hospice care, you can return to the information here as you notice new developments. Above all, remember that for each person, this is a distinctive journey. Sometimes, a person very near the end of life can seem to linger if he or she is not at peace with some matter. Or a person may be mentally and emotionally prepared to let go, but the body may not be ready to follow. Medical experts can assess these same signs and make estimates based on their experience, but ultimately, none of us can control or predict how or when the end of life will occur. We hope this guide helps bring you both knowledge and comfort. For more information or support, you can always turn to your Residential Hospice Care Team. We are here to support you throughout this experience.
Behavioral Changes Initial signs You may have already noticed some of these changes in behavior, which can start weeks or months before death, before physical symptoms appear.
Loss of interest: Your loved one’s enthusiasm for favorite activities may be replaced by a preference for solitude and reflection. Although this is a time for emotion, this drawing-down process is generally not the same as depression. Distance: Socially, your loved one may begin to be more withdrawn. He or she may not feel like having visitors, or may not have the energy for conversation. What’s more, your loved one is looking inward and preparing him- or herself — whether consciously or not. Appetite change: The body naturally begins to turn off hunger cues. Your loved one may reject offers of food, even favorites, or struggle to eat or drink. Remember that your loved one is following the signals given by his or her body, and they can be trusted. Sleeping: Energy is harder to come by, so it’s natural for your loved one to spend more time asleep. He or she may eventually be asleep more than awake. Keep in mind that even if he or she appears to be sleeping or unresponsive, hearing may still be intact.
Your loved one may begin to behave differently near the end of life. The common indicators described here are ordinary processes, and are not harmful to your loved one. They do not reflect on your relationship with your loved one or your performance as a caregiver.
The best thing you can do for your loved one is to recognize that these changes are normal, to resist trying to stop or correct them, and to do your best not to take them to heart.
As the End of Life Approaches These signs may be apparent for days, or even weeks. For the most part, they reflect natural physical changes (see the next page for more). Fatigue: As energy continues to diminish, your loved one may say his or her body feels heavy and tired. In addition to physical fatigue, mental drain may also occur. Restlessness: Your loved one may begin picking at bed linens or clothing, or making other abrupt arm movements. This is a sign of decreased oxygen circulation, but it does not cause pain, and there is no reason to stop it. Acting out of character: Your loved one could begin saying things that don’t make sense or don’t ‘seem like’ him or her. Perhaps he or she is more agitated than usual. Although this may be distressing, it is not happening because of anything you are doing. Confusion: The natural decrease in brain oxygen level can cause disorientation or confusion, which is normal. Your loved one may also confidently claim to see things that are not there, or to have spoken with someone who is absent or long dead. When responding, remember that these things are very real to him or her.
Final Energy Boost Sometimes, close to the end of life, a patient can experience a sudden surge of energy. He or she may be feeling livelier, engaging happily in conversation, or asking for food. This can happen for a short time, or last as long as a day. Be aware that this is not necessarily a sign of improving health. If your loved one experiences this happy occurrence, you can follow his or her lead and enjoy the gift of this quality time together.
Physical Changes Initial signs Physical symptoms, both internal and external, generally begin to appear after behavior changes have already begun. These can last for several days, or a few weeks. In hospice care, these normal processes usually do not need treatment.
Circulation changes: Blood pressure may begin to lower. Your loved one’s pulse can go up or down considerably; it can reach as high as 150 beats per minute, or as low as zero. Body temperature extremes: Your loved one may switch between fever and cold. Ask your hospice nurse how best to keep your loved one comfortable with blankets and cool, moist towels. Perspiration: Sweating can increase; your loved one may feel clammy to the touch. Skin color: Changes in body temperature or circulation can affect your loved one’s complexion. Anything from a feverish flush, to a pale blue tint, to a pasty yellow is not unusual. Hands, feet, fingernails, and toenails may be especially blue from reduced blood flow. If your loved one’s skin is a bright yellow color, ask the doctor or hospice nurse about the possibility of jaundice. Chest congestion: It is normal to lose the natural swallowing reflex, which can cause fluid and mucus to build up in the lungs and throat. Your loved one may breathe with increased rattling or snoring sounds, or cough without bringing anything up. Urine changes: Producing less urine is the natural result of eating and drinking less. Your loved one’s urine may appear more concentrated or in a range of darker colors, from deep yellow to brown, as the kidneys naturally begin to shut down. If you feel your loved one is having discomfort, ask the hospice nurse whether catheterization is a good idea.
As your loved one begins the natural transition to the end of life, his or her body will change accordingly. Some changes will start small and grow in intensity as the time nears; others can stop and start unpredictably. However, all are common parts of the process.
As the End of Life Approaches
The best thing you can do for your loved one is to keep your Residential Hospice Care Team informed of what symptoms your loved one is exhibiting, and voice any concerns you have about his or her comfort.
In the last hours to days of life, any of the initial signs on the opposite page may appear or intensify. Some other physical signals may also be present. Incontinence: Bladder or bowel control may be lost, potentially soiling the clothes and bed. The hospice nurse can advise you about bed and mattress protection and about keeping your loved one as clean and comfortable as possible. Unconsciousness: Your loved one may stop responding to sights, sounds, and/or people nearby. It is believed that hearing remains during this time, so you may continue speaking gently to him or her, even if there is no response. Breathing changes: It is common for a new breathing pattern to emerge, known as ‘Cheyne-Stokes respiration.’ Your loved one may not take a breath for many seconds, and then resume with a loud, labored breath. These periods of absent breath do not signal an emergency, nor do they cause injury or pain. Your loved one’s breathing may also sound loud and wet from increased congestion. Fading pulse: The pulse becomes increasingly weak. If you or the hospice nurse is unable to find a pulse, this is not abnormal, and it is not an emergency. Skin blotches: As blood flow slows down, patches may appear beneath the skin, colored dark red, blue, or purple. Eye activity: Your loved one’s eyes may be partially or fully open. Their appearance may be glassy, and tears might be produced.
What Can I Offer My Loved One? Compassion: Even if these new experiences seem unnatural, remember that questioning or resisting your loved one’s process can be distressing and even uncomfortable. Using force or guilt to get your loved one to eat is never recommended, and unless instructed by a medical professional, there is no need to intervene with any symptom.
Courtesy: Even if your loved one appears to be asleep or unresponsive, it is widely believed that hearing remains intact. Take care not to speak about your loved one as though he or she is not present.
Affirmation: Your loved one is experiencing many of these developments for the first time, which can be distressing or even scary. Help to reassure him or her that these sensations and emotions are normal and natural.
Comfort: If possible, help your loved one sit upright or elevated for better breathing and circulation. Periodically offer ice chips or a sip of water to soothe dry lips and mouth. If you have questions, ask your Residential Hospice Care Team what else you can do to help your loved one feel more at ease.
As your loved one’s condition, mood, and needs continue to change, one thing does not: you want to do everything you can to help.
Your loved one may need you in a different way now, but there is still much that you can do, as a caregiver and as a companion. Here are some of the most welcome gifts you can provide.
Company: Be a reassuring presence by speaking warmly and gently to your loved one. Even if silence is requested, just being physically present can be a great comfort — what’s more, touching or holding hands is a comforting way to connect.
Openness: Speak to your loved one from the heart. Offer forgiveness, gratitude, and love as much as you are able. If your loved one is not conscious or is unresponsive, identify yourself by name. There is no need to withhold feelings or tears for your loved one’s sake. This is the time for expressing yourself.
Permission: As the end of life nears, telling your loved one goodbye can bring relief to you both. Encouraging him or her to ‘let go’ can bring reassurance for the final moments of release.
Cooperation: You play an important role in your loved one’s care team. Help your Residential Hospice Care Team by following instructions and keeping them well informed. If you have any questions, don’t hesitate to ask — we are here to help.
At the End of Life Last Breaths A person’s final breaths may not look or sound like normal breathing. The breathing pattern is sometimes compared to a fish out of water. Keep in mind that these are likely more distressing to a person witnessing them than to the person receding naturally from life. There are some actions that caregivers can take to ease the effects of chest congestion during the last breaths. Changing position from the back to the side, or elevating the head of the bed, may offer relief. Careful moistening of the lips and mouth can avoid dribbled water in the throat. Medications can be prescribed that work to dry up excess moisture. After the person has what appears to be his or her last breath, the body may breathe once or twice more as all the air leaves the lungs.
Signs of Death For a hospice patient, death is not a medical emergency. It can help to get familiar with the signs of death, but know that you do not have to take immediate action.
Some signs of death are: • Not breathing • No heartbeat • Not blinking • Unresponsive • Eyelids slightly open, eyes fixed on a certain spot • Jaw relaxed, mouth slightly open
When Death Occurs Call Residential Hospice at (866) 902-5854. We have a hospice nurse on call at all times to help you right away. When the hospice nurse arrives, he or she will call the funeral home and provide assistance.
Partners in Care, Friends for Life
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