My loved one is dying. What can I expect? What can I do? Progressive changes in terminal illness. References:

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1 References: Joseph Brant Memorial Hospital, Burlington, Ont. My Loved One Is Dying What Can I Do? What Can I Expect? Prince George Home & Community Care, Prince George, BC. Palliative Care Manual. Prince George Hospice Society, Prince George, BC. What Happens Next. Regina Palliative Care Inc., Regina, Sask. Planning For Death At Home. Victoria Hospice Society, Victoria, BC. When Death Occurs At Home, Information For Caregivers. My loved one is dying What can I expect? What can I do? Produced by: Prince George Interdisciplinary Palliative Care Team Approved for use by: Interagency Palliative Care Committee Progressive changes in terminal illness Northern Interior Health Unit 1444 Edmonton Street, Prince George, BC V2M 6W5 Telephone: (250) Fax: (250) Reorder# Rev 03/04mac

2 We hope you find this booklet helpful in explaining the changes that can occur when someone has a progressive terminal illness. If you have any questions please speak to your medical team. They are there to help you through this difficult time. The following information is offered to help you understand what is normal and expected when someone has a progressive terminal illness. Just as the ill person has been a unique individual all their life, their process of dying will be unique. They may experience all or only some of the changes described. Changes may occur rapidly or slowly. People die when they are ready. Some of the changes you might notice include: Changes in appetite Changes in strength Changes in level of awareness Changes in breathing Changes as death nears

3 CHANGES IN APPETITE THE MOMENT OF DEATH They will feel less hungry and thirsty because they are less active and also because their bodies no longer process food as they usually did. Eat very little May feel unable to eat Lack interest in food Have difficulty swallowing COMFORT MEASURES No matter how much we prepare, no matter what we expect, the exact moment of death will arrive in its own time and in its own way. The experience of dying is different for every person and for every family. It is important that you do whatever you feel will help during this final stage. YOU WILL NOTICE: There will be no response. There will be no breathing or pulse. The life force and consciousness leave the body. There will be no pain. The person s eyes may or may not be open. Their jaw may slacken. Give only what they want and are able to manage. A reminder to swallow is helpful. Offer small amounts of fluid and favourite foods. Keep mouth clean and moist (a nurse can teach you mouth care). Lubricate the lips with ointment. Sometimes the most comforting thing we can do is to accept that someone no longer wants to eat, and to not keep offering food. COMFORT MEASURES FOR FAMILY AND FRIENDS Allow your tears and feelings to come. Breathe deeply. Be in physical contact with others; hug, hold hands, link arms or whatever is your custom. It is important to you to take whatever time you need to say goodbye. Do whatever feels right to you. Give children the opportunity to say goodbye. They generally cope well if they are given adequate support and information about what is happening.

4 CHANGES AS DEATH NEARS CHANGES IN STRENGTH Many changes occur as the body slows down and prepares for the final stages of life. Please remember that each situation is different and not necessarily all of the signs and symptoms will occur. Precise predictions are often difficult, but you can expect time will be limited once intake by mouth or urine output stops, and once there are obvious changes in breathing patterns. YOU MAY NOTICE THEY: Sleep longer. Eventually slip into a coma, which is a sleeplike state where they are unable to respond to the world around them. Become restless, pulling at bed linen and wanting to get up. May have visions of persons and /or things that you can not see or hear. Do not eat or drink. Become confused and/or restless. Breathe irregularly or more shallowly. May stop breathing for 10 to 30 seconds or longer. May have wet or moist breathing. Have cold or bluish hands and feet. May have mottled or purplish areas on their extremities. May have little urine output or they may lose bladder control. May not have bowel movements or may have oozing of stool. May develop a fixed stare. This usually occurs gradually over weeks and months, but it can also happen fairly quickly over a matter of days. Tire more easily and need to nap more often. Become exhausted with routine activities. Become short of breath with moving or talking. Need help to walk, bathe, dress or eat. Feel anxious or frustrated by changes in energy or strength. Become extremely weak and need to be cared for on couch and/or in bed. Set priorities so that strength is saved for activities that are most important. Organize their bed/sitting area so that they can easily reach all that they need. Give reassurance. Loss of independence can be upsetting. Pace activities. Provide periods for rest.

5 CHANGES IN LEVEL OF AWARENESS CHANGES IN BREATHING As a person s illness progresses, their ability to think clearly and to respond to their surroundings can be affected. Sometimes they seem to be confused or to hallucinate. They experience a different reality from ours. Sometimes, they may see or hear people or things that are not physically present. Changes may be due to a number of things. However, the most common reason for them is that the biochemical substances produced by the disease affect how the brain works. Become restless, excited, or irritable for no apparent reason. Are easily distracted and unable to follow simple directions, think clearly or communicate. Are unable to remember things such as familiar people, objects or events. Seem drowsy all the time, have a short attention span and have periods of confusion. Sit quietly to provide a comforting presence. Continue to listen carefully to what they are saying - they may be trying to communicate something important. Give reassurance. Remain calm yourself. Don t argue with them. Soothing music or a gentle massage may ease a restless person. Comatose people still experience hearing and touch do not discuss them as if they were not there. It is normal for a person dying of a terminal illness to experience several different breathing patterns. It can be distressing to watch the breathing changes. These changes are not distressing or painful for the person who is dying. The following information will help to prepare you. Have irregular or shallow breathing. May have short intervals of not breathing followed by regular and labored breathing called Cheyne-Stokes breathing. May have fluid build up in the back of the throat that may make their breathing sound wet or rattling. May use their chest and upper abdominal muscles to assist breathing, making it appear more labored. May have regular but deep and rapid breathing or slow deep breathing with pauses. Raise the head of the bed or raise upper body with pillows. Prevent choking by positioning them on their side. Medication may be given to reduce moist or rattling breath sounds. Give mouth care frequently to prevent mouth dryness.