Life`s Last Few Moments
Transkript
Life`s Last Few Moments
Our mission The CSSS du Suroît is responsible for maintaining and improving the health and well-being of the population within its territory, and for making available a range of health care and social services, including prevention, assessment, diagnosis, treatment, rehabilitation, support, and long-term care. In addition, these services should be integrated and of high quality. Life’s Last Few Moments... Better guide you 150, rue Saint-Thomas Salaberry-de-Valleyfield (Québec) J6T 6C1 Téléphone : 450 371-9920 Sans frais : 1 800 694-9920 www.santemonteregie.qc.ca/suroit GRM75217-E108-0712 In collaboration with our localnetwork partners, the CSSS du Suroît undertakes to ensure that services are delivered within its territory in an organized, coordinated manner that provides ready access to quality care with continuity of delivery. The CSSS du Suroît also undertakes to promote research and education in order to better meet the needs of the population. Table of Contents This moment of life... ........................................ 4 What about hope? ............................................. 5 The importance of the last moments ................. 6 Accompanying a person at the end of life. Yes, but... ................................... 8 The end of life... ................................................ 10 One to two weeks before death... ....................... 11 A few days to a few hours before death... .......... 13 Frequently asked questions ............................... 15 Bibliography ...................................................... 22 Internet resources to consult ............................. 22 This brochure has been prepared for relatives and friends accompanying a person near the end of their life. It offers information and support during periods which can be difficult. It encourages reflection about hope and life’s last few moments and talks about some of the possible physical and psychological signs of approaching death. Recognizing that accompanying someone at the end of life can be overwhelming, we have suggested ways that you can care for your loved one… Please note that, in this document, the masculine gender is used to refer to both sexes, without any intent to discriminate. 2 Prepared by the Palliative Care Nurse Consultants: Chantal Courtemanche, CSSS Champlain Karine Rodier, CSSS Richelieu Yamaska Chantal Rochefort, CSSS du Suroît Carole Roy, CSSS Vaudreuil-Soulanges Claudette Tremblay, Administrative Officer, CICM-RCM 3 This moment of life... What about hope? “Accompanying someone does not mean going ahead and showing him the way, imposing an itinerary, or even knowing which direction he will take; it is walking by his side, leaving him free to choose his path and the pace of his steps.” Present at all stages of life, hope allows us to accept and adapt to a situation. For persons at the end of life, hope represents a positive future, an inner strength that enriches life and allows one to go beyond the pain and suffering and which helps each dying person to live their life until their death (Herth & Cutcliffe, 2002 - translation). — (Patrick Verspieren - translation) Death is not an unfortunate accident, nor is it a medical failure or social affliction. Death is the last stage of life, the ultimate destination of man. During this stage, everyone hopes to be accompanied by persons who can help and will therefore allow the end of life to occur with serenity. It is often the relatives and close friends who, with the assistance and support of the health care team, can best offer this accompaniment. Their presence brings concrete meaning and value to the sense of life of this unique being, in spite of a great vulnerability. A deep respect for the person’s beliefs, confidences, silences and withdrawals demonstrates the value we assign to him as a human being. In spite of the announcement of the end of life, hope continues, but in a new way. Different for each individual, some may hope to feel better, no longer suffer, die peacefully, live until the next season, or have the chance for a reconciliation. The person may also hope that his loved ones will recover from his death. At times, for the family and friends, hope may appear unrealistic, but it is this glow that keeps them alive during days, weeks or months. Its expression must therefore be allowed. “Recognizing that hope is not the same thing as a promise, means that we have nothing to fear in offering encouragement.” — (Coulombe, 2008 - translation) 4 5 The importance of the last moments “The last moments of life, composed of a succession of losses and relinquishments, can also be extremely enriching for the person who is dying as well as his family and friends. It is the time for some final words, the last views on self and life as well as the moment for some final shared thoughts. But it cannot take place in a context of the “unspoken”, avoiding, running away or a conspiracy of silence.” — (De Hennezel, 1996 - translation) The importance of the last moments (cont.) A difficult but inevitable passage, the approach of death encourages thoughts concerning the meaning of the person’s life. Listening and offering a loving presence creates an atmosphere of calm reflection. It allows the story of a life to be told and handed down, good memories may be relived or shared. Dreams, regrets, sadness and fears may also be expressed. “The time that remains to live can take on its full significance through this time of putting things in order.” (De Hennezel, 1996 - translation). Therefore it is important to listen, not interrupt and to try to leave space for confidences. These are moments during which we say farewell and offer forgiveness while recognizing the emotional legacy left behind. This will not only help the person who is at the end of life, but also family and friends in dealing with their grief. Accompanying a person at the end of life. Yes, but... The end of life of a person we love can result in many changes and emotions that can disturb the balance between satisfying the needs of the dying person and the needs of the caregiver. Your wellbeing is important. Here are a few suggestions: • Take care of yourself; • Use some of the time you have for you, without feeling guilty. It is not selfish. It is an strategy that will enable you to take better care of the person who needs you; • Recognize the limits of your endurance and strength by asking for help, even if the person who is dying is reluctant; • Show and express your joy, your anger, your sadness and your frustration; • Feel proud of what you are doing for this person; • Pursue activities you enjoy in order to replenish your strength. 8 9 The end of life... Each person has his own way of living this final stage, bringing a unique dimension to this experience. As the person becomes truly aware that they are going to die, a process of separation begins and the following psychological signs may appear. The person may: • Look back over his life; • Lose interest in activities; • Turn inwards, beginning to withdraw from the world around him; • Sometimes, he may have a desire to see all his friends; • To say farewell to relatives and friends, and to places he loved; • Give gifts, withdraw from his worldly property; • Express sadness; • Speak openly about death with one or more people. One to two weeks before death... Certain physical and behavioural changes may be observed because the body’s vital functions are slowing down. There may also be changes in the person’s circulation and metabolism. • A change in appetite; • Moving around is more and more difficult; • Difficulty breathing; • Muscle weakness; • Oedema (swelling) in the extremities; • Difficulty sleeping (reversing day and night); • Disorientation (confusion); • Pulling/picking at clothing and sheets. However, these signs do not appear in a particular order and may not all be present. On the physical level, the body finally slowly begins to stop functioning. It no longer has the same needs and a general weakness gradually takes over. For some people, the signs which precede death appear a few weeks before, while for others, it may only be a few days. 10 11 One to two weeks before death... (cont.) A few days to a few hours before death... The care suggested focuses on the patient’s comfort and respects the wishes of the person at the end of life. • Be present; • Offer foods that the person prefers; • Offer ice cubes or frozen juice (popsicles); • Do not force the person to eat or drink; • Offer mouth (oral) care; • Place the person in a comfortable position and offer help to move around; • Gently massage and warm the person’s extremities; • Say who you are instead of having the person guess; • Speak calmly, in a natural manner; • Do not try to limit movements; • Read to the person out loud; • Play some music that he likes; • Place familiar objects and photos in the room; create a pleasant atmosphere; • Air out the room; • Continue to respect the person’s preferences and wishes, such as sleeping with his socks on, putting on make-up, keeping his pyjamas on... Some people regain energy. Following which, the signs observed for the past one or two weeks may intensify and other symptoms appear: • The person may no longer be able to walk, sit, turn, on their own; • Their body temperature may change (fever, low temperature); • Extremities may become mottled and cold; • Sweating may increase; • Oedema (swelling) sometimes decreases or disappears; • Eyes may become glassy, tearful, and remain half-open; • Difficulty swallowing; • Minimal absorption of liquids • Dry mouth; • A decrease or lack of urination; • Loss of control of the bladder and/or intestines; • Breathing can become irregular, superficial, with pauses; • Terminal rales: noisy breathing caused by abundant secretions; • Agitation or inertia; • Loss of consciousness. 12 13 A few days to a few hours before death... (cont.) In addition to the care already suggested, the following suggestions may also be useful: • Stay close to the bed; • Hold the person’s hand; • Speak softly, even if the person is unconscious; • Apply damp compresses to semi-open eyelids; • Apply artificial tear drops; • Direct a fan set to low on the person’s cheek; • Offer mouth care; • Explain what you are going to do before you begin. Frequently asked questions How can I help my loved one go through this period? Very simply by listening to what he has to say without interrupting. Do not try to fill moments of silence, even if they appear heavy. Allow him to talk about his life, his regrets, his losses, his sadness and his dreams. Listening will help the person who wants to confide. What should I do if my relative cries? Allow him to express his emotions whether it is pain, anger, regret, remorse, feelings of guilt, anxiety or others. Do this without trying to change his ideas or wanting to make him feel better. Allow yourself to cry as well. Tears express emotions and sometimes liberate tensions. Why does my relative no longer eat or drink? A loss of appetite and thirst is caused by the metabolism slowing down. The body no longer has the same needs and indicates that it no long desires or can tolerate food and liquids. It is therefore important to respect the person’s appetite. Even if your relative no longer eats, you need to keep his mouth moist and remember that mouth care is an important comfort measure. 14 15 Frequently asked questions (cont.) Frequently asked questions (cont.) Is installing an intravenous drip (solution) a good idea? The intravenous solution is composed of salt or sweetened water and does not contain any medication or vitamins. The solution increases the fluids in the body, particularly those of the respiratory system, and can therefore contribute to the duration of discomfort. How can we evaluate the level of discomfort when the person can no longer express himself? Facial expressions, groans, changes in behaviour, are signs of discomfort. The body may also become rigid. These manifestations are possible signs of discomfort. If you observe these signs, do not hesitate to discuss these with the staff. Should we give him oxygen? Before beginning or continuing the use of oxygen, you need to ask yourself whether it makes the person more calm and comfortable. Sometimes, using oxygen can help reduce difficulty breathing and/or anxiety. On the other hand, you need to consider the discomfort related to the tubes and noise of the air circulating. Why is the breathing noisy at the end of life? A person at the end of life may have difficulty in swallowing their saliva and getting rid of secretions. Rales are therefore the sound of secretions and the air passing across the relaxed vocal cords. This noise usually bothers the people around the patient, rather than the patient himself. We hope to ensure the greatest possible comfort for the patient and the members of the health care team will do everything they can to ensure the person’s comfort. How can we solve this problem? In the case of abundant secretions in the back of the throat, position the patient comfortably by raising the head of the bed. Turning the person on their side can help. We can also give medication to reduce the production of new secretions. Using suctioning equipment to remove secretions is usually ineffective and can be disturbing for the person. 16 Is my loved one going to die more quickly with the administration of morphine? Some people believe that morphine causes death since, in the past, it was mainly given during the end of life. Nevertheless, morphine is a safe medication, and when used properly, it eases pain and makes the patient more comfortable. It is not only effective in relieving pain but also helps with other symptoms of discomfort such as difficulty breathing. In fact, some people use it regularly for several years while remaining active. Should we delay using morphine? No. Morphine can be used as soon there is pain and it relieves the person’s discomfort. It is often advantageous to treat these symptoms from the very beginning because if we wait too long, the pain and discomfort can become more difficult to manage. Is there a quantity of morphine that we must not exceed? No. The appropriate quantity is that which controls the pain and discomfort. The quantity is adjusted gradually, which is why it is important to use smaller doses between the regular doses. 17 Frequently asked questions (cont.) Frequently asked questions (cont.) At the end of life, is it still necessary to continue giving medication, checking blood pressure, temperature, blood sugars, blood samples, etc.? At the end of life, the benefits versus the disadvantages of treatments are considered. The objective of all care provided is the person’s comfort. For example, taking vital signs and blood sugar measurements may be less useful near the end of life, particularly if these interventions disturb the person. Should we stay with our loved one? This is a personal question that depends on you and your loved one’s actual state, his needs and expectations. What matters is that you have the desire, the possibility, the capacity and the availability to stay, while looking after yourself. If the person has a great deal of difficulty swallowing, it is necessary to stop giving medication by mouth and to give those that need to be continued in another way. Why does my loved one have a fever? At the end of life, the temperature control centre no longer functions properly. The person’s temperature will vary. The use of medication against fever will have little effect, but could help ease the discomfort caused by the increased temperature. Why is my loved one agitated? There are several reasons: it could be due to pain, discomfort, the progression of the disease or the manifestation of fear as death approaches. You can help him relax with music, reading, massages, or by sharing memories. A calm attitude and warm presence are reassuring. Medication can also facilitate relaxation. 18 Does my loved one hear me? At the moment, no research has confirmed the fact that a person continues to hear until the end. On the other hand, previous experience has shown that certain persons become calmer with the sound of a familiar voice. It may be beneficial to continue to speak to him gently. What should I do when my loved one is unconscious? Simple gestures are often reassuring and comforting. These should be chosen according to the person’s preferences and what they were accustomed to. For example, touch or talk to him gently, play his favourite music. How much time is left? No one can answer this. In spite of certain attempts at predicting the moment of death, it is always a secret and the way it will occur continues to be mysterious in many regards. 19 Frequently asked questions (cont.) Frequently asked questions (cont.) Why talk about death to young children? How can we accompany our adolescent during this difficult time? An adolescent understands the principle of death, but experiences it in a different manner. He is pulled between the desire to spend time with his family and spending time with his friends. Generally we expect adolescents to act like adults and to support the other members of the family. But it is important to avoid giving them too many housekeeping or family responsibilities. Do not try to make them assume the role of an adult. Social expectations often result in a lack of support for the adolescent. They need caring adults who confirm that it is okay to feel a range of emotions and contradictory feelings (sadness, anger, fear, worry, pleasure with their friends, etc.). “It is not talking about death that traumatizes children, but how we talk to them about it.” — Elizabeth Kubber-Ross - translation Children have a tendency to react better when they are informed and there are no surprises. So the explanations provided to children are extremely important. Kept in the dark, their fertile imaginations can alter and amplify reality. It is preferable to make them part of the family’s experience. How can we accompany young children in this difficult time? Adults prepared to speak openly about death help children to understand that it is natural to be sad when losing a loved one. Children need warmth and understanding. Explaining that it is all right to feel sad, cry or feel angry allows them to validate their experience. This caring attitude facilitates and encourages children to express their feelings. Nevertheless, it is important to take their age into account. Simple answers help them to understand and accept the situation. How can we experience or express our spirituality? By expressing the significance of a belief, or lack of belief, values and life experiences, death and after-death. For some people, these inner reflections and significant rituals are comforting and provide support by making this period a little more serene. Depending on the availability in your centre, various spiritual support persons can accompany you. Contacts Each situation is unique; do not hesitate to speak to the staff for more information. CLSC de Salaberry-de-Valleyfield 450-371-0143, ext. 3146 20 21 Bibliography • Canadian Hospice Palliative Care Association, Charte de droit des aidants naturels. www.acsp.net. • COULOMBE, Manon. 2008 - L’espoir: une flamme à entretenir même dans un contexte de fin de vie, première ligne. 12 (1), 9-13. • CSSS de Laval. 2007 - Guide de pratiques cliniques en soins palliatifs à l’intention des intervenants. • De Hennezel. 1996 - Sens et valeur du temps qui précède la mort. La fin de la vie, qui en décide? Forum Diderot, Paris: Presses universitaires de France, 16-28. • Montreal Jewish General Hospital, Palliative Care Advisory Team, Les étapes du processus de la mort. • HAMILTON, Jean. 1999 - Quand un parent est malade: comment expliquer la maladie grave aux enfants. Canadian Cancer Society. • CH de Granby, 2002 - Quand la maladie grave survient, s’informer, comprendre, agir. Internet resources to consult • Canadian Hospice Palliative Care Association www.acsp.net • Association quebecoise de soins palliatifs www.aqsp.org • Canadian Virtual Hospice www.carrefourpalliatif.ca • La Maison Victor-Gadbois www.palli-science.com • www.traverserledeuil.com • www.maisonmonbourquette.com • _______________________________________ • _______________________________________ • _______________________________________ 22 I am standing on the sea shore, A ship sails in the morning breeze and starts for the ocean. She is an object of beauty and I stand watching her Till at last she fades on the horizon and someone at my side says: «She is gone.» Gone! Where? Gone from my sight that is all. She is just as large in the masts, hull and spars as she was when I saw her And just as able to bear her load of living freight to its destination. The diminished size and total loss of sight is in me, not in her. And just at the moment when someone at my side says, «She is gone», There are others who are watching her coming, and other voices take up a glad shout: «There she comes» And that is dying! — William Blake