Palliative care for brain tumours: Factors to considerPPalliative care for brain tumours: Factors to considerPalliative care for brain tumours: Factors to considerEnglishNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemNAAdult (19+)NA2009-07-10T04:00:00ZEric Bouffet, MD, FRCPC Karen Drybrough, RN Laura Janzen, PhD, CPsych, ABPP-CN Ute Bartels, MDFlat ContentHealth A-Z<p>An in-depth look at the factors and treatments to consider concerning palliative care. Trusted answers from Canadian Paediatric Hospitals.</p><p>Palliative care is care designed to make a child with a life-limiting condition as comfortable as possible when it's clear that further cancer-directed treatment won't be possible or effective. For brain tumours, palliative care refers to end-of-life treatment, and is provided when death is expected within a period up to six months. Palliative care specifically refers to intensive, active care aimed at the relief of physical and emotional symptoms. To "palliate" means to relieve. </p><h2>Key points</h2> <ul><li>Palliative care enters into your discussion with the doctor when the goal of treatment is no longer focused on curing a condition but on making your child as comfortable as possible. </li> <li>Palliative care can be provided at the same time as cure-directed treatments.</li> <li>The palliative care service at the hospital can offer guidance to help you make decisions about your child's care.</li></ul>
Soins palliatifs pour les tumeurs cérébralesSSoins palliatifs pour les tumeurs cérébralesPalliative care for brain tumours: Factors to considerFrenchNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemNAAdult (19+)NA2009-07-10T04:00:00ZEric Bouffet, MD, FRCPCKaren Drybrough, RNLaura Janzen, PhD, CPsych, ABPP-CNUte Bartels, MDFlat ContentHealth A-Z<p>Aperçu approfondi des facteurs et des traitements à envisager en ce qui concerne les soins palliatifs. Réponses dignes de confiance des hôpitaux pédiatriques canadiens.</p><p>Les soins palliatifs sont conçus afin de rendre un enfant atteint d’un trouble limitant l’espérance de vie le plus à l’aise possible quand il est clair que d’autres traitements contre le cancer seront impossibles ou inefficaces. Pour les tumeurs cérébrales, les soins palliatifs s’entendent du traitement de fin de vie, et on les offre quand on prévoit un décès dans une période pouvant aller jusqu’à six mois. Les soins palliatifs concernent particulièrement les soins actifs et intensifs visant le soulagement de symptômes physiques et affectifs. Le terme « pallier » signifie « atténuer ». </p><h2>À retenir</h2> <ul><li>Les soins palliatifs entrent dans la discussion avec le médecin quand le but du traitement n’est plus axé sur la guérison d’un état, mais sur le meilleur confort possible à offrir à l’enfant.</li> <li>On peut offrir des soins palliatifs en même temps que les traitements visant la guérison.</li> <li>L’équipe des soins palliatifs de l’hôpital peut vous guider dans la prise de décisions concernant les soins de votre enfant.</li></ul>

 

 

Palliative care for brain tumours: Factors to consider1388.00000000000Palliative care for brain tumours: Factors to considerPalliative care for brain tumours: Factors to considerPEnglishNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemNAAdult (19+)NA2009-07-10T04:00:00ZEric Bouffet, MD, FRCPC Karen Drybrough, RN Laura Janzen, PhD, CPsych, ABPP-CN Ute Bartels, MDFlat ContentHealth A-Z<p>An in-depth look at the factors and treatments to consider concerning palliative care. Trusted answers from Canadian Paediatric Hospitals.</p><p>Palliative care is care designed to make a child with a life-limiting condition as comfortable as possible when it's clear that further cancer-directed treatment won't be possible or effective. For brain tumours, palliative care refers to end-of-life treatment, and is provided when death is expected within a period up to six months. Palliative care specifically refers to intensive, active care aimed at the relief of physical and emotional symptoms. To "palliate" means to relieve. </p><h2>Key points</h2> <ul><li>Palliative care enters into your discussion with the doctor when the goal of treatment is no longer focused on curing a condition but on making your child as comfortable as possible. </li> <li>Palliative care can be provided at the same time as cure-directed treatments.</li> <li>The palliative care service at the hospital can offer guidance to help you make decisions about your child's care.</li></ul><h2>What is palliative care?</h2> <p>Palliative care involves easing the severity of an ultimately fatal condition, providing support until a child's body cannot sustain life any more. It embraces the child as a whole, taking into consideration the child's physical, emotional, spiritual, and social needs, along with the needs of the family. Palliative care involves relief from pain and other symptoms that may develop because of the child's condition. A variety of professionals, including community or Interlink nurses, doctors, and social workers, have expertise in palliative care. </p> <h2>When will you need to consider palliative care?</h2> <p>Palliative care enters into your discussion with the doctor when the goal of treatment is no longer focused on curing a condition but on making your child as comfortable as possible. This might take place even when experimental treatments are being considered or have been chosen. Experimental treatments may offer hope but have not yet shown a proven benefit, which is why palliative care would still need to be introduced. </p> <p>Palliative care may be part of your discussion with your child’s health care team for a variety of reasons, including:</p> <ul> <li> relief of pain and other symptoms</li> <li> decision-making about goals of care for your child and their quality of life</li> <li> information and support for family members, including brothers and sisters</li> <li> end-of-life care</li> <li> grief and bereavement support</li></ul> <p>Palliative care can be provided at the same time as cure-directed treatments.</p> <p>Depending on the type and severity of your child's condition, palliative care may go on for some time or may quickly turn into end-of-life care, where the death may be days or weeks away. </p> <h2>Where is palliative care provided?</h2> <p>In many cases children will remain in the hospital during palliative and end-of-life care. Other options include a community hospital closer to your home, or home itself. Your child’s Oncology and Palliative Care team can provide more information on the resources available for each option. </p> <p>You can continue to keep your child in hospital to receive palliative care, you can take them home, or you can consider a hospice, if one is available in your area. Hospices are facilities that provide live-in medical and emotional care for the terminally ill. Some hospices offer in-patient palliative care along with a family room, so the whole family can be together. Some hospices also provide supportive services to help care for a dying child at home. In some places, residential hospices are also an option. Access to hospices will vary depending on the type of health care services available in your particular area. For example, in Canada, there are very few hospices available for children but in the United Kingdom, hospices for children are much more widely available. </p> <p>Sometimes volunteers are available to visit your child at home and provide some care which would be similar to that provided in a hospice. </p> <h2>Who organizes palliative care?</h2> <p>Palliative care is generally organized between the child's primary health care team and a team of professionals in the hospital's palliative care service. These individuals count on the services of a full range of other health care professionals to meet the needs of a dying child and deliver the necessary care. This includes doctors, nurses, psychologists, physiotherapists, occupational therapists, social workers, and music therapists. </p> <h2>Can palliative care be provided at home?</h2> <p>It is still common for terminally ill children to die in hospital and may be in the child's best interest. However, even if your child has a tracheotomy or is technology-dependent, there are options for taking care of your child at home with the necessary nursing support. </p> <p>If you choose this option, you will be taught the skills you need to look after your child and have time to practice them before you leave the hospital. Home visiting by community nurses will also be arranged. Your child's doctors at the hospital, with help from the palliative care team, will talk to your family doctor or pediatrician so that they can help you once you get home. The palliative care team will make sure you have access to a team of medical professionals 24 hours a day, seven days a week if needed. Of course, you can bring your child back to the hospital at any time if needed. </p> <p>Sometimes though, at home care is just not possible. Alternately, sometimes home care is a possibility but the parents feel more comfortable keeping their child in the hospital. </p> <h2>Is managing palliative care at home difficult?</h2> <p>It can be quite difficult, both physically and emotionally for families. It can mean many sleepless nights and anxiety. Depending on where a family lives, less or more support may be available through community services. There are respite care institutions for children (however limited in some countries) that enable the family to rest from time to time. If being at home is the child's and family's wish, the experience can be very rewarding and comforting for all involved in the final stages of the child's life. </p> <p>Support from your family and friends is very important. No parent can handle it alone. Your support group may include, but may not be limited to, family, siblings, grandparents, step-family, extended family, and friends. </p> <h2>What do you need to think about if you want your child to be cared for at home?</h2> <p>Here are some questions to ask yourself:</p> <ul> <li> Do you feel you have enough information about what your child’s final days will be like in order to decide if caring for him at home is possible? </li> <li> What is your child's preference? Is your child mature enough to be involved in this decision? Do they have an understanding of what is happening? If you feel that you would like to talk to them about this but find yourself unable to, ask the health care team for help. </li> <li> How do you feel about having other caregivers (like community nurses and doctors) come into your home to help care for your child? Are you prepared for the loss of privacy that will occur? </li> <li> What might the financial costs of caring for your child at home be? Will you or your partner have to give up a job?</li> <li> If your child was sharing a room with siblings, do you have another room to move your child to?</li> <li> How do other members of the family feel? How do your child's siblings feel?</li> <li> Do you have other family members, good friends, or neighbours to help you?</li> <li> The experience will be exhausting both physically and emotionally. Can you look after your own needs at the same time, or find a way to cope with your partner or others? </li> <li> Do you have someone you can call if you are having a bad day, such as a friend, family member, pediatrician, or another member of the treatment team? </li> <li> Will doctors or members of the health care team come to your house if needed?</li> <li> Who should you call if there is an emergency?</li> <li> Will having your child die at home influence the way you subsequently view your home? Will you still be comfortable there once your child has died? </li></ul> <h2>How do you decide which option is best for your child?</h2> <p>You must consider your child's end-of-life care needs and how you think you and your child will be most comfortable in seeing them met, with the support available. The choice is entirely up to you and your family. Some parents feel dying at home is more private and comforting for the child. Others prefer the hospice option, if it is available, which offers the medical care but in a non-hospital environment. Some want the peace of mind of having their child cared for in hospital at all times. Another consideration is whether you're in a big city or a small town, where the options and community support may be fewer. </p> <h2>Who can help with the decision making?</h2> <p>If you are trying to make a decision about your child's end-of-life care, the treatment team may refer you to the palliative care service at the hospital. You can also ask for a referral to this service. Professionals in this service will offer guidance to the medical team and the family on how to care for a dying child. This is accomplished by encouraging shared decision making, enhancing choices, facilitating the care of children at home when possible and desired, and by supporting children and their families through the living, dying, and grieving experience. </p> <p>If you are referred to the palliative care service, a member of the palliative care team will discuss all the issues with you and provide the support necessary to make the transition home, if that is your choice. These individuals are there for you, and will not judge your decision, since it is completely a personal one. Discharge planners and social workers will likely also be involved. Throughout, the palliative care team and the medical team will be involved. </p> <h2>Other important factors to consider in your child's care</h2> <h3>Nutrition</h3> <ul> <li> How is your child fed? Is a feeding tube required?</li> <li> If your child is fed a special formula, will you need help to buy or find the formula?</li> <li> As your child's condition worsens, they will have a lower need for food. Follow their cues and avoid force feeding.</li> <li> You may require information from your treatment team about any safety issues pertaining to eating, such as swallowing problems. </li></ul> <p>For more information:</p> <ul> <li><a href="/Article?contentid=1403&language=English">Swallowing Problems </a></li> <li><a href="/Article?contentid=1402&language=English">Feeding Tubes </a></li></ul> <h3>Financial resources</h3> <ul> <li> Does your child have medical insurance? Are your other children covered under a family insurance plan?</li> <li> Do you need help to obtain everyday supplies for your child?</li> <li> Do you need a referral to obtain other items for your child such as furniture, clothing, or toys?</li> <li> Do you have avenues for financial support?</li> <li> Does your child need more diapers than normal for their age? This will influence supply needs.</li> <li> Social workers can help you determine answers to these questions and will review individual financial resources with you.</li></ul> <h3>Community resources</h3> <ul> <li> Are there any other helping agencies or persons involved in your child’s care? In particular, are there any of these you would like to include in this planning process? </li> <li> Do you or other family members belong to a church, social groups, clubs, or associations?</li> <li> Would you like to talk to another parent who has a child with similar needs?</li> <li> Do you want a referral for counselling, including individual, marital, family, child, or sibling counselling?</li> <li> Social workers and community/Interlink nurses can help.</li></ul> <h3>Family life</h3> <ul> <li> Taking care of your child at home will change your lifestyle. Your goals, and the goals of the treatment team, are to maintain your child's comfort and dignity as much as possible. </li> <li> Do you have concerns about your other children?</li> <li> How would you describe your family’s strengths? Making use of your family's strengths can help optimize your family's functioning.</li> <li> What are your family’s needs at this time?</li> <li> What are your hopes for your child and your family during and beyond your child's end of life care?</li></ul> <h3>Education</h3> <ul> <li> Is it feasible for your child to attend school in some capacity? If your child is able to stay in school, it can help them connect with friends and maintain some routine in their life. </li> <li> What support is needed to enable your child to continue with school attendance as long as possible?</li> <li> Do you have a contact person in a school program?</li> <li> Will your child need equipment adapted for use at home?</li> <li> If school attendance is not possible but your child wants stimulation, is there home education available?</li> <li> Social workers and community/Interlink nurses can help direct any questions to appropriate members of your treatment team.</li></ul> <h3>Parenting and child care</h3> <ul> <li> What hours do you think you will need nursing for your child?</li> <li> In the event you need to leave home quickly or if you become unable to look after your child, who will watch your child with special needs or your other children? </li> <li> What is your plan for child care when the nurse is absent?</li> <li> What provisions have you made for the care of your other children? For example, day care, getting to soccer practice, etc.</li> <li> Do you work outside the home? Do you plan to in the future?</li> <li> Do you go to school? Do you plan to in the future?</li></ul> <h2>What has to happen before your child can be cared for at home?</h2> <p>A diagnosis of illness in its terminal stages has been made for which specialized hospital care is considered to be no longer beneficial. </p> <p>You and the treatment team have decided together that your child can be treated at home. If you have indicated that you wish your child to be in an active-treatment hospital, arrangements will already have been made with the physician. </p> <p>The health care team has evaluated your ability to cope, to provide the appropriate care, and, if feasible, to have your child remain at home. </p> <p>Before your child receives care at home, you must understand the nature of the care that your child will receive. For example, you must understand that: </p> <ul> <li> Your child will be kept as comfortable as possible.</li> <li> Oxygen, suctioning, and other comfort measures will be administered, if appropriate. </li> <li> An agreement has been reached between you and the health care team that because of your child’s prognosis, the use of medications and life supporting equipment in the event that their heart stops would not be in your child’s best interest. Ideally, you will have agreed to a "no CPR (cardiopulmonary resuscitation) order." You will have a copy of a no CPR letter from your child’s doctor to take home with you. </li> <li> Transport to an active-treatment hospital is still possible if the child has specific complications (such as uncontrolled pain or uncontrolled seizures) or if you change your mind about your child remaining at home. The physician should be notified, if possible, before transport. Ideally this should all be discussed prior to your child's discharge from hospital. </li></ul> <h2>What services are available at home?</h2> <p>Numerous support services are available in the community to help care for your child at home. Once your needs have been evaluated, you will be connected with a community physician who can provide palliative care support. You will also still be in close touch with the medical team and clinic nurse at the hospital. You will be put in touch with resources like Community Care Access Centres (in Ontario), which provide nursing, occupational therapy, physiotherapy, and social work support. </p> <p>The specific support you need (such as a given number of nursing hours) will be arranged, as will any medications and equipment you need at home, like a special bed or oxygen. Other services, like music therapy, may also be available in the community. It's important to be aware, however, that there are limitations to services, especially nursing, and financing may be an issue. </p> <h2>What if money is an issue?</h2> <p>Having a sick child often takes a large financial toll on the family. It may result in a parent having to stop working to be at home and available for the child. Members of the palliative care service or hospital social workers and discharge planners can talk with you about financial resources. You may also be eligible to apply to a hospital's palliative care fund or other community or organization funds. </p> <h2>Will your child need to have company around the clock?</h2> <p>You'll know ahead of time how much care and attention your child will need. Early on, your child many not need company all the time, but as their condition progresses, they should not be left alone. Take advantage of the offers of friends and families to help out with chores and to give you a break from time to time. Sometimes volunteer services can also be arranged to help out. Respite care may also be an option. </p> <h2>What will your child's quality of life be like?</h2> <p>Again, depending on the severity of your child's condition, and the stage they are at, they may be able to function quite well for a significant amount of time. They may be able to lead a fairly normal life, going to school, playing with friends, and going on family vacations. As the end of life approaches, your child may be bed-ridden, depressed, and withdrawn, and need the support of certain equipment. </p> <h2>Will you have to see your child suffer?</h2> <p>Parents seem to worry most about seeing their children in pain. The necessary steps can be taken to make sure your child gets medication or other non-pharmacological pain relief to minimize their pain. Doctors will try to balance pain control with lucidity, so that you can still meaningfully communicate with your child and they can be as pain-free as possible. However, as your child deteriorates, as part of the dying process, your child will communicate less. Communication will start to take different forms, such as a touch instead of talking. </p> <h2>What will members of the palliative care team do?</h2> <p>Members of the palliative care team will work with you to focus on your child and meeting their needs. Their goal is to facilitate getting your child home and having them well cared for in their final days. This will involve coordinating the services you'll need. </p> <p>They will also help you articulate what you want to see happen in terms of your child's care and help you discuss difficult issues. They will prompt you to think about what's coming, so you're prepared. Generally, parents are so focused on treatment that it's difficult to think about the possibility of death. A member of the palliative care team might ask the following: </p> <ul> <li> What do you hope for your child?</li> <li> What are your worst fears?</li> <li> Is your child getting sicker?</li> <li> What if your child doesn't rally this time?</li> <li> What should you plan for?</li></ul> <p>Team members will also encourage you and your partner to discuss your wishes. You both may have very different ideas about what to expect. For instance, if your child comes home, which family wish to be present at the time of death? Siblings, for example, might not want to be present when your child dies. Do you want to have their body removed immediately, or would you prefer to have time alone with your child after their death occurs? </p> <p>The palliative care coordinator will then assess your needs, recommend any equipment needed at home, and help make arrangements to obtain the necessary equipment. Often the need for equipment is minimal at first and increases as the disease progresses. This information will all be itemized in an individualized care plan that will, among other things, specify the amount of care needed by the patient. </p> <p>You will also need to discuss the hospital training you will need to provide your child's care. You should have a "back-up caregiver" who can train with you and be available to help out. </p> <p>The team can also help you determine how to talk with your child about dying and work through the questions they may have.</p> <h2>How do you make sure your care wishes are followed?</h2> <p>How you want your child cared for is up to you and your child. The palliative care coordinator may suggest that you put your wishes in writing so that everyone involved is aware of your expectations. This is sometimes referred to as a directive. You are, however, always entitled to change your mind. Be aware that if your child is at home and their condition deteriorates and you panic and call for emergency medical services, the paramedics who come to your home are required to resuscitate or provide other life-saving treatments, which are referred to as extraordinary measures. </p>Palliative care for brain tumours: Factors to consider

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