Palliative care for newborn babiesPPalliative care for newborn babiesPalliative care for newborn babiesEnglishNeonatologyNewborn (0-28 days)NANASupport, services and resourcesAdult (19+)NA2009-10-28T04:00:00ZChristine Newman, MD, FRCPC10.000000000000052.00000000000002034.00000000000Flat ContentHealth A-Z<p>Read about palliative care, and what a family goes through when their child needs palliative care. Coping with the dying process is also discussed.</p><p>To palliate means to relieve. Palliative care is care designed to make a baby with a life-limiting condition as comfortable and symptom-free as possible when it is clear that further treatment aimed at cure is neither possible nor effective. Historically, palliative care has been thought of as end-of-life treatment. However, this form of intensive, active care aimed at the relief of physical and emotional discomfort can be beneficial to the baby and family from the time of diagnosis of a life-limiting illness. </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 baby as comfortable as possible.</li> <li>Support your baby by being there, creating positive memories and holding and touching your baby as much as possible.</li> <li>Prepare your family and other children for what will happen and seek counselling to help you cope.</li></ul>
Soins palliatifsSSoins palliatifsPalliative care for newborn babiesFrenchNeonatologyNewborn (0-28 days)NANASupport, services and resourcesAdult (19+)NA2009-10-28T04:00:00ZChristine Newman, MD, FRCPC10.000000000000052.00000000000002034.00000000000Flat ContentHealth A-Z<p>Apprenez-en davantage sur les soins palliatifs et sur les épreuves que doivent surmonter une famille lorsqu'un nouveau-né nécessite des soins palliatifs. On y discute également du processus de décès et de la façon de composer avec ce processus.</p><p>Pallier signifie soulager. Les soins palliatifs sont conçus pour assurer le confort maximal des bébés qui souffrent d'une maladie qui limite la durée de vie lorsqu'il est certain qu'aucun autre traitement n'est possible ou efficace pour traiter le problème. Historiquement, les soins palliatifs étaient considérés comme des soins en fin de vie. Cependant, cette forme de soins intensifs et actifs vise à soulager l'inconfort physique et émotionnel et peut s’avérer bénéfique pour le bébé et la famille à partir du moment où l'on reçoit un diagnostic de maladie qui limite la durée de vie.</p><h2>À retenir</h2> <ul><li>Les soins palliatifs entrent dans la discussion avec votre médecin lorsque le but du traitement n’est plus centré sur la guérison d’une maladie, mais à rendre votre bébé aussi confortable que possible.</li> <li>Soutenez votre bébé en étant présent, créez des souvenirs positifs et prenez et touchez votre bébé autant que possible.</li> <li>Préparez votre famille et les autres enfants à ce qu’il va arriver et cherchez le soutien d’un conseiller afin de vous aider à composer avec la situation. </li></ul>

 

 

Palliative care for newborn babies474.000000000000Palliative care for newborn babiesPalliative care for newborn babiesPEnglishNeonatologyNewborn (0-28 days)NANASupport, services and resourcesAdult (19+)NA2009-10-28T04:00:00ZChristine Newman, MD, FRCPC10.000000000000052.00000000000002034.00000000000Flat ContentHealth A-Z<p>Read about palliative care, and what a family goes through when their child needs palliative care. Coping with the dying process is also discussed.</p><p>To palliate means to relieve. Palliative care is care designed to make a baby with a life-limiting condition as comfortable and symptom-free as possible when it is clear that further treatment aimed at cure is neither possible nor effective. Historically, palliative care has been thought of as end-of-life treatment. However, this form of intensive, active care aimed at the relief of physical and emotional discomfort can be beneficial to the baby and family from the time of diagnosis of a life-limiting illness. </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 baby as comfortable as possible.</li> <li>Support your baby by being there, creating positive memories and holding and touching your baby as much as possible.</li> <li>Prepare your family and other children for what will happen and seek counselling to help you cope.</li></ul><figure> <img alt="Mom and dad with sleeping baby" src="https://assets.aboutkidshealth.ca/akhassets/LIB_bereavementpic_14_EN.jpg" /> </figure> <p>Palliative care embraces the baby as a whole, taking into consideration physical, emotional, spiritual, and social needs, along with the needs of the family members. Palliative care involves relief from pain and other symptoms that may have developed. A variety of professionals, including 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 baby as comfortable as possible. Depending on the type and severity of your baby's condition, palliative care may quickly turn into end-of-life care, where death may be days or even hours away.</p><h2>Where is palliative care provided?</h2><p>In many cases, newborn babies will remain in the neonatal intensive care unit or NICU during palliative and end-of-life care. Other options that you can explore with your baby’s doctor include a community hospital closer to your home, or home itself. Your baby’s doctor can provide more information on the resources available for each option.</p><h2>Who organizes palliative care?</h2><p>Palliative care is generally organized through a team of professionals in a 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 baby and deliver the necessary care. This includes nurses, doctors, social workers, psychologists, and chaplains.</p><h2>Will you have to see your baby suffer?</h2><p>Parents seem to worry most about seeing their baby in pain. All necessary steps will be taken to make sure your baby gets medication or other non-pharmacological pain relief to minimize their pain.</p><h2>What will you feel at this stage?</h2><p>If your baby has been sick for a while, you probably have an idea about what's coming. This in no way makes it easier to cope, but you may at least be able to consider some key issues. You will probably experience anticipatory grief, which is grief experienced prior to an actual death. You will likely feel sad, depressed, stressed, angry, and fearful for your baby and your family. Everyone who goes through this experience undergoes very difficult physical and emotional changes. Over time, you will find a way to cope with your feelings.</p><h2>Where can you find emotional support?</h2><p>Palliative care team members have experience helping families in situations similar to yours and can provide you with emotional support. A palliative care team member can also put you in touch with other families who have been through palliative care. Chaplains or other spiritual advisors are often part of the team at the hospital and are available to offer spiritual and emotional care to patients and families of diverse backgrounds and religions. You can also turn to pastoral care workers, clergy, children’s mental health associations, and private therapists for support.</p><h2>What can you do to support your baby?</h2><ul><li>Be there for your baby. Your baby knows you're there. They know your voice. They know your smell.</li><li>Try to create positive memories during your time together.</li><li>Hold and touch your baby as much as possible.</li></ul><h2>How do you manage your baby's symptoms?</h2><p>The goal of palliative care is to provide as much comfort as possible. One main consideration is pain relief, by way of drugs or non-pharmacological means such as gentle touching. Your role will be to ensure that your baby is indeed getting the drugs and that they are effective. Call for help if your baby is in pain or you can't make them comfortable.</p><h2>Preparing your family for palliative care</h2><p>It is important to realize that everyone in your family will be affected, from your partner, to your other children, to grandparents and other members of your extended family. Someone from the palliative care service at your hospital will be available to speak to your whole family if you wish. This will open the door for discussions about everyone's fears and concerns. It's important to be aware that each family member may be in a different place when it comes to being able to accept the reality that a baby is dying.</p><p>As much as possible, families need to focus on the time that they have with their child and make the most out of that time.</p><h2>Issues for the family</h2><p>The psychological strains on the family are usually difficult. A family’s ability to cope may change over time as the baby’s illness progresses. Families need to celebrate the part of family life that is still intact. In this regard, it is helpful if both parents are as involved as they can be in the care of their baby and any other children.</p><p>It is important for information to be shared with all family members, taking into account the age of siblings, for example, and the desire for information.</p><p>Parents are often torn between spending time with their sick baby in the NICU and maintaining their other family and professional responsibilities. It is helpful when families set boundaries around the illness so that not all activities are affected by or centre on the illness.</p><p>The shift to palliative care may be fraught with possibilities of blame, shame, and guilt in some healthy family members.</p><p>Signs of stress in caregivers may include sadness, irritability, criticism, defensiveness, contempt, and withdrawal. Family members should consider consulting an appropriately experienced therapist.</p><p>Shameful thoughts and feelings, including intense anger, ambivalence, death wishes, and escape fantasies, are normal. It is important for family members to have appropriate outlets for these feelings.</p><p>Family breakdown may occur but is not a necessary outcome of the prolonged illness of an baby. Appropriate support, guidance, and information can help strengthen the family. Communicating thoughts and feelings will go a long way towards avoiding a family breakdown. Enlisting the services of a professional counsellor, such as a social worker, psychologist, or other health professional, may be very helpful.</p><h3>Issues for siblings</h3><p>Healthy siblings can become the forgotten family members. Siblings need to have accurate information appropriate to their developmental level. They should also understand why their parents are absent more than usual.</p><p>Young children need to know the answers to these questions:</p><ul><li>How did their brother or sister become ill?</li><li>Were they the cause of their brother’s or sister’s illness in any way?</li><li>Will they catch the same illness?</li></ul><p>Siblings need the opportunity to talk about their feelings with someone they trust. Since they may not want to burden their parents, it is important to help them connect with an appropriate person.</p><p>Children grieve as intensely as adults, but show it in different ways. These are some common symptoms:</p><ul><li>physical distress such as headaches or stomach aches</li><li>regression in behaviour</li><li>fear of their own or their parents’ death — they may become hypervigilant</li><li>anger and acting-out behaviour</li><li>repression of their feelings and withdrawal</li><li>lack of interest in their usual or new activities</li><li>pretending physical symptoms to gain attention</li><li>depression, which appears in children most commonly as irritability or restlessness</li></ul><p>Anger is common in healthy siblings. They resent the care and attention devoted to the ill baby. Guilt is also common. Siblings may feel guilty because they are healthy, or they may fear that they are somehow responsible.</p><p>Healthy children often feel they must compensate for the loss of their sibling. In addition, parents may cast them in the role of a substitute for the ill baby.</p><p>For healthy children, the illness and death of a sibling may challenge their sense of immunity from serious illness and death until old age. This is a crisis that forces them to readjust their view of the world and their place in it.</p><h3>How do you discuss death with your other children?</h3><p>Speak plainly and honestly, providing just as much detail as is necessary depending on the child’s age, when you talk about the concept of death. Hearing the news may be upsetting. Depending on your child's age and level of maturity, they will likely need to think things over, absorb the information, and come back with more questions, so you may have this discussion several times.</p><p>Do your best to answer your child’s questions but don't worry if you don't have all the answers. Keep your answers simple and be honest. Use words and sentences that your child can understand.</p><h2>How long does the dying process take?</h2><p>The doctor will likely be able to give you a rough idea of how long it will be before your baby dies. It's not an exact science, though, so it may happen more quickly or slowly than you are expecting.</p><h2>What does death look like?</h2><p>Generally, death is very peaceful. Many people think that a child’s death is very traumatizing to watch, but that is rarely the case. In certain cases, however, there may be a risk of bleeding, gasping, or seizures. The doctor will know and will do his best to prevent this from happening with the appropriate care.</p><h2>What are the physical signs that death is imminent?</h2><h3>Coolness</h3><p>Your baby’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 their body may become darker and the skin mottled. This is a normal indication that the circulation of the blood is decreasing to their body’s extremities and is being reserved for the most vital organs. Keep your baby warm with a blanket, but not an electric one.</p><h3>Restlessness</h3><p>Your baby may make restless and repetitive motions. 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 effect, speak in a quiet, natural way, lightly massage the forehead, read to your baby, or play some soothing music.</p><h3>Changes in breathing patterns</h3><p>Your baby’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 your baby on their side may bring comfort.</p><h2>What are the non-physical signs that death is imminent?</h2><p>Your baby 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 baby in a normal tone of voice, identify yourself by name when you speak, hold your baby’s hand, and say whatever you need to say that will help them let go.</p><h2>How will you know when your baby has died?</h2><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><h2>What happens after the death?</h2><p>Your baby 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 baby before they are taken away. Ideally before this time you will have made any necessary decisions about autopsy and organ and/or tissue donation.</p><h2>What do you tell people after it happens?</h2><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 baby has died and what the funeral arrangements are.</p>https://assets.aboutkidshealth.ca/akhassets/LIB_bereavementpic_14_EN.jpgPalliative care for newborn babies

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