Palliative Care at HomePPalliative Care at HomePalliative Care at HomeEnglishCardiologyChild (0-12 years);Teen (13-18 years)HeartCardiovascular systemNon-drug treatment;Support, services and resourcesAdult (19+)NA2010-05-19T04:00:00ZLaura Beaune, RNChristine Newman, MD, FRCPC8.0000000000000066.00000000000001921.00000000000Flat ContentHealth A-Z<p>Learn more about what is involved in providing palliative care for your child at home.<br></p><p> This page outlines important factors to consider for families wishing to manage palliative care at home.</p><h2> Key points </h2> <ul><li>In order to receive palliative care at home, your child must be diagnosed with an illness in its terminal stages for which specialized hospital care is no longer beneficial. </li><li>When considering palliative care at home, it is important to think about your child's nutrition, your family's financial resources, community resources, your other children, your child's own preference, your undestanding of your child's condition and their final days and your child's education.</li> <li>To receive palliative care at home, you and your health care team must agree that because of your child’s prognosis, using medications and life-supporting equipment in the event that their heart stops is not be in your child’s best interest.</li></ul>
Soins palliatifs à la maison pour les anomalies cardiaques congénitalesSSoins palliatifs à la maison pour les anomalies cardiaques congénitalesPalliative Care at Home for Congenital Heart ConditionsFrenchCardiologyChild (0-12 years);Teen (13-18 years)HeartCardiovascular systemNon-drug treatment;Support, services and resourcesAdult (19+)NA2010-05-19T04:00:00ZLaura Beaune, RNChristine Newman, MD, FRCPC8.0000000000000066.00000000000001921.00000000000Flat ContentHealth A-Z<p>Familiarisez-vous avec le sujet des soins palliatifs à apporter à votre enfant à la maison.<br></p><p>Cette page présente les facteurs importants à prendre en considération par les familles qui souhaitent gérer les soins palliatifs à domicile.</p><h2> À retenir </h2> <ul><li>Afin qu’il puisse recevoir des soins palliatifs à domicile, votre enfant doit avoir reçu un diagnostic d’une maladie en phase terminale pour laquelle des soins spécialisés à l’hôpital ne sont plus bénéfiques. </li> <li>Lorsque vous envisagez des soins palliatifs à la maison, il est important de penser à la nutrition de votre enfant, aux ressources financières de votre famille, aux ressources communautaires, à vos autres enfants, aux préférences de votre enfant, à votre compréhension de l’état de votre enfant, et aux derniers jours de votre enfant, ainsi qu’à son éducation.</li> <li> Pour que votre enfant puisse recevoir des soins palliatifs à domicile, votre équipe de soins de santé et vous-même devez vous entendre sur le fait qu’en raison du pronostic de votre enfant, le recours à des médicaments et à un équipement de maintien des fonctions vitales en cas d’arrêt cardiaque ne sera pas dans son intérêt supérieur.</li></ul>

 

 

Palliative Care at Home1688.00000000000Palliative Care at HomePalliative Care at HomePEnglishCardiologyChild (0-12 years);Teen (13-18 years)HeartCardiovascular systemNon-drug treatment;Support, services and resourcesAdult (19+)NA2010-05-19T04:00:00ZLaura Beaune, RNChristine Newman, MD, FRCPC8.0000000000000066.00000000000001921.00000000000Flat ContentHealth A-Z<p>Learn more about what is involved in providing palliative care for your child at home.<br></p><p> This page outlines important factors to consider for families wishing to manage palliative care at home.</p><h2> Key points </h2> <ul><li>In order to receive palliative care at home, your child must be diagnosed with an illness in its terminal stages for which specialized hospital care is no longer beneficial. </li><li>When considering palliative care at home, it is important to think about your child's nutrition, your family's financial resources, community resources, your other children, your child's own preference, your undestanding of your child's condition and their final days and your child's education.</li> <li>To receive palliative care at home, you and your health care team must agree that because of your child’s prognosis, using medications and life-supporting equipment in the event that their heart stops is not be in your child’s best interest.</li></ul><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, significant support may be available through community services, as well as respite care that enables 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> <h2>Who should be involved in palliative care at home?</h2> <p>Everyone who is affected by the ill child and who has an effect on the problems created by the illness should be involved, preferably from the beginning of the care. This 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 are likely to be like in order to decide if caring for them at home is possible? </li> <li>Do you feel you have enough information about what your child's final days are likely to be like in order to decide if you are capable of overseeing your child's final days at home and managing the stress that will come with it, particularly for an extended period of time? </li> <li>What is your child's preference? Is your child old 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? </li> <li>What might the financial costs of caring for your child at home be? Will you or your spouse have to give up a job?</li> <li>How do other members of the family feel? (e.g. if your child shares a room with siblings, are they prepared to go through this experience?) </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 spouse or others? </li> <li>Will having your child die at home influence the way you subsequently view your home? Will you still be comfortable there once the child has died? </li></ul> <h2>Other important factors to consider in your child's care</h2> <h3>Nutrition</h3> <ul> <li>How is your child fed? Is a tube required? </li> <li>If your child is fed a special formula, will you need help to buy or find the formula? </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>Have you applied for Handicapped Children’s Benefits (ACSD) or other financial support? </li> <li>Does your child need more diapers than normal for their age? This will influence supply needs. </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></ul> <h3>Family life</h3> <ul> <li>Do you see your child’s homecoming as making a significant change in your lifestyle, and if so, how? </li> <li>Do you have concerns about your other children? </li> <li>Can you describe how you will see your child in a few months? What are your short-term goals for your child? </li> <li>Can you describe how you will see your child in a few years? What are your long-term goals for your child? </li> <li>How would you describe your family’s strengths? </li> <li>What are your family’s needs at this time? </li></ul> <h3>Education</h3> <ul> <li>Will your child be going to school? </li> <li>Do you know which school your child will attend? </li> <li>Has your child been referred to the infant and toddler program? </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></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>Will you need help finding day care for your other children? </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 that is in its terminal stages has been made for which specialized hospital care is considered to be no longer beneficial. </p> <p>An appropriate consultant, if one was requested, has agreed with the attending physician’s diagnosis.</p> <p>You, as parent or guardian of the child, have been consulted and requested to have their child remain 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. You 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 a secondary illness unrelated to the terminal illness 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 may be connected to a family physician who provides palliative care (not all family doctors do so) or, in some cities, you may be connected with a palliative care physician. You will also still be in close touch with the medical team and clinic nurse at the hospital. </p> <p>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 (e.g. 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, are also 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 can talk with you about financial resources. </p> <p>In Canada, parents can apply for a federal benefit known as the Employment Insurance Compassionate Care Benefit, which provides 6 weeks of paid unemployment leave. In Ontario, parents can apply for Ontario Family Medical Leave. 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 will 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 thier 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 and need the support of certain equipment. </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 will 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 are prepared. Generally, parents are so focused on treatment that it is 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 spouse to discuss your wishes. You both may have very different ideas about what to expect. For instance, if your child comes home, do you want to be there at the time of death or say goodbye beforehand and leave the house? Do you want to have the body removed immediately, or would you prefer to have time alone with your child after their death occurs? </p> <p>A member of the palliative care team 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, and having a "back-up caregiver" who can train with you and be available to help out. </p>Palliative Care at Home

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