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Palliative care for brain tumours: Preparing for the endPPalliative care for brain tumours: Preparing for the endPalliative care for brain tumours: Preparing for the endEnglishNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemNAAdult (19+)NA2009-07-10T04:00:00ZKaren Drybrough, RN, MScN Ute Bartels, MD Laura Janzen, PhD, CPsych, ABPP-CNFlat ContentHealth A-Z<p>Preparing for the death of a terminally ill child is difficult but important. In-depth information on end-of-life decisions concerning palliative care.</p><h2>How do you say goodbye to your passing child?</h2> <p>A palliative care team member can help you articulate what you want to say to your child. Your child may enjoy listening to you say things like "we all love you and we will think of you always." You may want to repeat this numerous times. Or you may want to simply express your love through touch — snuggling, kisses — or soothing activities, like storytelling or gentle play. You as parents will know what you and your child are comfortable with. </p><h2>Key points</h2> <ul><li>It is difficult to predict exactly when death will occur, even for medical professionals.</li> <li>If you are able to do so, consider making arrangements for when your child dies ahead of time.</li></ul>
Soins palliatifs pour les tumeurs cérébrales : Se préparer pour la finSSoins palliatifs pour les tumeurs cérébrales : Se préparer pour la finPalliative care for brain tumours: Preparing for the endFrenchNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemNAAdult (19+)NA2009-07-10T04:00:00ZKaren Drybrough, RN, MScNUte Bartels, MDLaura Janzen, PhD, CPsych, ABPP-CNFlat ContentHealth A-Z<p>Se préparer à la mort d’un enfant en phase terminale est difficile, mais important. Renseignements approfondis sur les décisions relatives à la fin de vie en ce qui concerne les soins palliatifs.</p><h2>Comment dire adieu à un enfant sur le point de mourir?</h2> <p>Un membre de l’équipe des soins palliatifs peut vous aider à exprimer ce que vous souhaitez dire à votre enfant. Votre enfant pourrait apprécier vous entendre dire des choses comme « nous t’aimons tous et nous penserons toujours à toi ». Vous souhaiterez peut-être le répéter à de nombreuses reprises. Sinon, vous souhaiterez peut-être simplement exprimer votre amour par le toucher (caresses, baisers) ou des activités réconfortantes, comme raconter une histoire ou jouer doucement. En tant que parents, vous saurez ce avec quoi vous et votre enfant êtes à l’aise. </p><h2>À retenir</h2> <ul><li>Il est difficile de prédire exactement le moment du décès, même pour des professionnels de la santé.</li> <li>Si vous estimez pouvoir le faire, vous pourriez envisager de planifier les funérailles de votre enfant.</li></ul>

 

 

Palliative care for brain tumours: Preparing for the end1391.00000000000Palliative care for brain tumours: Preparing for the endPalliative care for brain tumours: Preparing for the endPEnglishNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemNAAdult (19+)NA2009-07-10T04:00:00ZKaren Drybrough, RN, MScN Ute Bartels, MD Laura Janzen, PhD, CPsych, ABPP-CNFlat ContentHealth A-Z<p>Preparing for the death of a terminally ill child is difficult but important. In-depth information on end-of-life decisions concerning palliative care.</p><h2>How do you say goodbye to your passing child?</h2> <p>A palliative care team member can help you articulate what you want to say to your child. Your child may enjoy listening to you say things like "we all love you and we will think of you always." You may want to repeat this numerous times. Or you may want to simply express your love through touch — snuggling, kisses — or soothing activities, like storytelling or gentle play. You as parents will know what you and your child are comfortable with. </p><h2>Key points</h2> <ul><li>It is difficult to predict exactly when death will occur, even for medical professionals.</li> <li>If you are able to do so, consider making arrangements for when your child dies ahead of time.</li></ul><h2>Information about the process of dying</h2> <h3>When will the end come?</h3> <p>Depending on your child's condition, they may have lots of quality time ahead. If the condition is more advanced, the death may be days or weeks away. Predicting exactly when death will occur is extremely difficult, even for medical professionals. As your child deteriorates, this will become a little easier. </p> <h3>How long will the actual passing take and what will it look like?</h3> <p>The doctor will likely be able to give you a rough idea how long it will be before your child dies.</p> <p>Although parents may worry that dying will cause their child to suffer, death is usually quite peaceful for the child who is dying. Sometimes, however, there may be risk of bleeding, gasping, or seizures. The doctor will know and will take steps to do his best to prevent this from happening with the appropriate care. </p> <h3>What are the signs that death is coming?</h3> <p>Sleeping: The child may spend an increasing amount of time sleeping and appear to be uncommunicative or unresponsive and, at times, difficult to arouse. This normal change is due in part to changes in the metabolism of the body. Sit with your loved one and hold their hand, not shake it. Speak softly and normally, not loudly. Plan to spend time with your child when they seem the most alert and awake. Don't talk about your child in their presence; instead, speak to them directly as you would normally, even though there may be no response. Never assume your child cannot hear. </p> <p>Disorientation: The child may seem to be confused about the time, place, and identity of the people around them, including close and familiar people. This, too, is due in part to changes in the child’s metabolism. Family members should identify themselves by name before they speak rather than leaving the child to guess who they are. They should speak softly, clearly, and truthfully when they need to communicate something important for their child’s comfort, such as, "It is time to take your medication." They should explain the reason for this communication, for example, "So you won’t begin to hurt." </p> <p>Withdrawal: The child may seem unresponsive, withdrawn, or comatose. This state indicates a preparation for release, a detaching from surroundings and relationships, and a beginning of letting go. Because hearing can remain until the end, speak to your child in a normal tone of voice, identify yourselves by name when you speak, hold the child’s hand, and say whatever you need to say that will help the child relax or feel peaceful. </p> <p>Vision-like experiences: The child may speak or claim to have spoken to people who have already died, or to see or have seen places not presently accessible or visible. This does not indicate a hallucination or a drug reaction. The child is beginning to detach from this life and is being prepared for the transition so it will not be frightening. Don't be frightened and don't contradict, explain away, belittle, or argue about what the child claims to have seen or heard. Just because others cannot see or hear something does not mean that it’s not real to the child. Affirm these experiences and understand that they are normal and common. </p> <p>Incontinence: The child may lose control of bladder and bowel as the muscles in that area begin to relax. Discuss with the nurse ideas of how to keep your child clean and comfortable. </p> <p>Food and fluids: The child may have a decrease in appetite and thirst, wanting little or no food or fluid. The body naturally begins to conserve the energy that is expended on these tasks. Don't force food or drink into your child, or to use guilt to manipulate her into eating and drinking something. To do this only makes the child much more uncomfortable. Give them small chips of ice, frozen Gatorade, or juice. Glycerine swabs may keep their mouth and lips moist and comfortable. A cool, moist washcloth on the forehead may also increase the child’s physical comfort. </p> <p>Restlessness: The child may make restless and repetitive motions, such as pulling at the bed linen or clothing. This is a common occurrence that is due in part to the decrease in oxygen circulation to the brain and to changes in metabolism. Don't interfere with or try to restrain such motions. To have a calming affect, speak in a quiet, natural way, lightly massage the forehead, read to the child, or play some soothing music. Sometimes restlessness may indicate that something still unresolved or unfinished is disturbing the child and preventing her from letting go. Your child’s health care team can assist you in identifying what may be happening and help you find ways to help your child find release from the tension and fear. Other things that may be helpful in calming the child are to recall a favourite place the child enjoyed or a favourite experience, or to read something comforting, to play music, and to reassure the child that it is okay to let go. </p> <p>Congestion: The child may have gurgling sounds coming from their chest. These sounds may become very loud. This normal change is due to the decrease in fluid intake and an inability to cough up normal secretions. Suctioning usually only increases the secretions and causes sharp discomfort. You can gently turn your child’s head to the side and allow gravity to drain the secretions. You may also gently wipe the mouth with a moist cloth. It's important to know that this sound of congestion does not indicate the onset of severe or new pain. </p> <p>Coolness: The child’s hands, arms, feet, and then legs may be increasingly cool to the touch. At the same time the colour of the skin may change. The underside of the body may become darker and the skin mottled. This is a normal indication that the circulation of the blood is decreasing to the body’s extremities and is being reserved for the most vital organs. Keep your child warm with a blanket, but not an electric one. </p> <p>Changes in breathing pattern: The child’s regular breathing pattern may change. One pattern, called "Cheyne-Stokes" breathing, consists of breathing irregularly: shallow breaths with periods of no breathing of five to 30 seconds and up to a full minute, followed by periods of rapid, shallow pant-like breathing. These patterns are very common and indicate a decrease in circulation in the internal organs. Elevating the head or turning the child on their side may bring comfort. Speak gently and hold your child’s hand. </p> <h3>How will you know when your child has died?</h3> <p>The signs of death include such things as no breathing, no heartbeat, the release of the bowel and bladder, no response, eyelids slightly open, pupils enlarged, eyes fixed on a certain spot, no blinking, and the jaw relaxed and the mouth slightly open. </p> <h3>What happens after the death?</h3> <p>The body does not have to be moved until you and your family are ready. You should take as much time as you need to say good-bye to your child. Be aware that depending on when your child dies, the body may be in the house for hours or overnight. The doctor will come to your home to certify your child’s death. You can contact them directly or ask a health care professional to make the contact for you. The funeral home is then notified. Someone will come to remove the body and set up a time for you to visit the funeral home to finalize arrangements. </p> <p>Ideally before this time you will have made any necessary decisions about autopsy and organ/tissue donation.</p> <h3>What do you tell people after it happens?</h3> <p>You don't need to provide lots of detail. Be brief. Have someone activate a phone tree to alert people who need to know your child has died and what the funeral arrangements are. </p> <h2>Making arrangements for when your child dies</h2> <p>Sometimes, preparing an obituary or newspaper announcement ahead of time can be helpful. Again, this will be very painful but you'll be able to give it more attention at this stage and choose the words you'll be satisfied with. If you would like donations to be made to a given charity or memorial fund in honour of your child, you can make those arrangements ahead of time as well. </p> <p>Make a list of people who need to be notified when your child dies. Appoint someone the keeper of the list and have him make the calls when the time comes. Arrange for friends and family to help take care of any siblings and look after things like cooking and cleaning. </p> <h3>About autopsy</h3> <p>You may want to think about whether you want your child to undergo an autopsy, and whether you want to make arrangements for organ/tissue donation. The need for an autopsy will be discussed with a physician ahead of time. It is generally undertaken when there is a chance that something about the cause of death, or the underlying illness, may be uncovered. In this case, parents have the right to refuse an autopsy. If there are any suspicious aspects to the death (unexpected, unexplained) the coroner may order an autopsy, which cannot be refused. This is unlikely to occur with a palliative patient. </p> <h3>About organ and tissue donation</h3> <p>Children who die of a cancerous brain tumour are usually not eligible to donate their organs or tissues for transplant as per current policies. However, there are sometimes exceptions to the rule. Experts in organ donation can be consulted via your treatment team to find out about your child's organ donation possibilities. </p> <p>Another option, and one that is available to all children who die of brain tumour, is to donate tumour tissue to research. This help researchers learn about the biology of brain tumours that are not yet well understood. Research can also help identify new or better treatment strategies. </p> <p>Organ or tissue donation by a child is something that should be considered and discussed when the child is in good health, so they can make their wishes known. While it is difficult to discuss this issue, it is very worthwhile. Many families who have decided to donate their child's organs take comfort in the action because they feel that some good has come out of their child's experience. If a child is old enough to participate in the discussion about tissue/organ donation, he should. If there are religious issues, it's helpful to speak to a religious official. Most major religions support organ and tissue donation. </p> <p>If a child dies, and the decision has been made beforehand as to whether donation is an acceptable option, parents give consent through a formal consent process. </p> <p>The process of removing the organs/tissue is carried out with complete respect and dignity. It is a sterile procedure like any other carried out by a surgeon or pathologist. It will not cause any disfigurement should a parent want an open casket at the child's funeral. No one will be able to tell that the child was an organ/tissue donor. Organ/tissue donation also won't delay funeral arrangements and there is no cost to the family for donation. </p> <p>Knowing that your child helped another sick child or research can be very comforting. Many parents report that the organ donation was the one "bright light" to come out of their child's tragedy. </p> <h3>Planning your child's funeral</h3> <p>If you feel you are able to do so, you might consider pre-planning your child's funeral. Funeral directors, health care professionals, family members, and friends can help with this. </p> <p>Decide which type of funeral you'd like to have and where. You might want a service in a church, synagogue, mosque or other religious location. Or, you could consider a service at home, by the graveside, or in a hall. </p> <p>Think about how to commemorate your child's life and make the event as personal as possible. Try to involve any other siblings in the planning. You will want to think about the following: </p> <ul> <li> Finding a funeral home that meets your needs</li> <li> Burial or cremation</li> <li> An open or closed casket</li> <li> Having the casket at home for a while before the service</li> <li> The outfit you’d like your child to wear</li> <li> Whether you'd like to dress your child yourself</li> <li> Whether there are special items (blankets, toys, pictures, goodbye letters) you’d like to put in the coffin</li> <li> Time alone with your child at the funeral home before the service</li> <li> A small gathering or a large one</li> <li> A reception following the service</li> <li> Prayer cards, funeral program</li> <li> Photos of your child on display</li> <li> The style of the service (serious, upbeat)</li> <li> Hymns and readings, a special song to eulogize your child, music your child loved, poetry<</li> <li> An opportunity for friends, relatives, classmates, teachers, and others to share memories and pay tribute</li> <li> Flowers, other decorations</li> <li> Gravestone</li> <li> Recording the service since you may be too overwhelmed to remember it</li></ul>Palliative care for brain tumours: Preparing for the end

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