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Palliative Care Presentation
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Palliative Care Presentation

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Slides for McMaster Child Life Studies case study presentation

Slides for McMaster Child Life Studies case study presentation

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  • Care in the home - Our innovative Home Palliative Care Program supports people who are dying from a terminal illness and allows them to be cared for at home. Our doctors help manage the patient’s pain and other symptoms, coordinate their care, and support and educate both patient and family. Care for children and their families - Our Max and Beatrice Wolfe Centre for Children’s Palliative Care and Grief is the only specialized centre in Ontario that offers medical and counseling support for dying children and their families in their home.  Our Dr. Jay Grief Program educates and supports children who have a loved one who is dying or who has died. We use creative approaches to help children learn about dying and death, and to encourage them to ask questions and explore their feelings. Our counselors also help adults learn to speak with children about dying and death.
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    1. Case Study: Oncology Patient at End-of-Life Care By Brian, Heather, Kate & Madison
    2. Agenda <ul><li>Review of the case study </li></ul><ul><li>Objectives </li></ul><ul><li>Medical Aspects of Cancer Treatment </li></ul><ul><li>The Process of Death </li></ul><ul><li>Palliative Care </li></ul><ul><li>Parents’ Perspectives </li></ul><ul><li>Patients’ Perspectives </li></ul><ul><li>Siblings’ and Extended Families’ Perspective </li></ul><ul><li>Hospital Staff’s Perspective </li></ul>
    3. Objectives <ul><li>To understand the treatments oncology patients may experience throughout their illness </li></ul><ul><li>To gain a comprehensive awareness of end-of-life processes and experiences, as well as available palliative care resources in Canada </li></ul><ul><li>To understand the process of dying through the eyes of a patient, a parent, a sibling and a grandparent </li></ul><ul><li>To understand how healthcare professionals can cope with the death of a pediatric patient </li></ul>
    4. Acute lymphoblastic leukemia <ul><li>Cancer of the white blood cells characterized by excess lymphoblasts </li></ul><ul><li>Most common in childhood with a peak incidence at 2-5 years of age, and another peak in old age </li></ul><ul><li>Accounts for approximately 80% of all childhood leukemia cases, making it the most common type of childhood cancer (in the US) </li></ul><ul><li>Cure rate in children is 85% </li></ul><ul><li>Acute' refers to the relatively short time course of the disease (being fatal in as little as a few weeks if left untreated) to differentiate it from the very different disease of Chronic Lymphocytic Leukemia which has a potential time course of many years. </li></ul>
    5. Symptoms <ul><li>Initial symptoms are not specific to ALL, but worsen to the point that medical help is sought. The signs and symptoms of ALL are variable but follow from bone marrow replacement and/or organ infiltration. </li></ul><ul><li>Generalized weakness and fatigue </li></ul><ul><li>Anemia </li></ul><ul><li>Frequent or unexplained fever and infections </li></ul><ul><li>Weight loss and/or loss of appetite </li></ul><ul><li>Excessive and unexplained bruising </li></ul><ul><li>Bone pain, joint pains </li></ul><ul><li>Shortness of Breathe </li></ul><ul><li>Enlarged lymph nodes, liver and/or spleen </li></ul><ul><li>Pitting edema (swelling) in the lower limbs and/or abdomen </li></ul><ul><li>Petechiae, which are tiny red spots or lines in the skin due to low platelet levels </li></ul>
    6. Chemotherapy <ul><li>Chemotherapy is a method of treating cancer by using one drug or a combination of drugs. </li></ul><ul><li>These powerful drugs work by slowing or stopping the cancer cells from growing, spreading or multiplying to other parts of the body. </li></ul><ul><li>Treats whole body at once, unlike targeted treatments such as radiation, so whole body feels the effects of treatment. </li></ul><ul><li>Is usually given on an outpatient basis, but may involve hospital stay for young children </li></ul><ul><li>These drugs can damage healthy cells and the immune system in addition to cancerous cells. This can cause many side effects such as: appetite/weight loss, hair loss, nausea and vomiting, fatigue, memory loss, flu-like symptoms and aches, mouth sores, constipation or diarrhea, difficulty swallowing, kidney/urinary tract or bladder infections, etc. </li></ul>
    7. Goals of Chemotherapy <ul><li>A doctor may prescribe chemotherapy for a cancer patient to achieve any of five treatment goals: </li></ul><ul><li>1. To destroy the cancer cells. </li></ul><ul><li>2. To shrink a tumor before other treatments </li></ul><ul><li>3. To destroy residual cancer cells after other treatments </li></ul><ul><li>4. To prepare the patient for a bone marrow or stem cell transplant. Some cancers can be treated with bone marrow or stem cell transplants from a donor. Before the transplants take place, the cancer patient’s original bone marrow is destroyed using high doses of chemotherapy drugs. </li></ul><ul><li>5. To relieve cancer symptoms (palliative chemotherapy). In some cases, chemotherapy can reduce the pain and other symptoms of cancer. </li></ul>
    8. How is Chemotherapy Given? <ul><li>1) Orally – many drugs with very strict schedule </li></ul><ul><li>2) By Injection - IV, catheder, port-o-cath </li></ul>
    9. Radiation <ul><li>Radiation therapy is the use of a certain type of energy (called ionizing radiation) to kill cancer cells and shrink tumors. </li></ul><ul><li>Same as a regular x-ray but in much higher doses of radioactive energy, that are damaging to healthy tissue </li></ul><ul><li>The goal of radiation therapy is to damage as many cancer cells as possible, while limiting harm to nearby healthy tissue. </li></ul><ul><li>Takes about 15-30 minutes </li></ul><ul><li>Usually visit the hospital or treatment center as outpatients 4 to 5 days a week for several weeks </li></ul><ul><li>May require a CT scan to determine the exact location of cancer cells to target (called a ‘simulation’ </li></ul><ul><li>M nurse will draw or ‘tattoo’ with a marker the area defined for treatment </li></ul><ul><li>It takes days or weeks of treatment before cancer cells start to die. Then, cancer cells keep dying for weeks or months after radiation therapy ends. </li></ul><ul><li>To keep healthy parts healthy  use lower doses, spread out over time, target only specific area, use drugs to counter effects (common one is to stimulate saliva glands) </li></ul>
    10. Things You Should Know About Radiation Treatment <ul><li>After you receive radiation treatment, you need follow-up appointments for the rest of your life to monitor cell growth. This is done with CT, MRI, PET, X-ray and blood tests. </li></ul><ul><li>Patients need to be fitted for a special radiation mask that is attached to the table and helps keep their head still and in place during treatment  scary! </li></ul><ul><li>For treatment of the body, a Vac-Loc bag, or big beanbag molded over your body, will be used to keep your body still  also scary! </li></ul><ul><li>Children may be sedated if they cannot keep still </li></ul><ul><li>To prevent unnecessary radiation exposure, parents aren't allowed in the treatment room </li></ul><ul><li>Side effects  skin damage (red, sensitive, irritated, swelling) at site and more sensitive to sunlight </li></ul>
    11. Radiation
    12. Explaining Treatments to Children <ul><li>Chemo is like taking lots of medicine to help the inside of your body be even stronger and fight all the cancer cells. Sometimes the inside is working so hard at fighting the cancer cells that the outside feels tired or sick. </li></ul><ul><li>Radiation is like: </li></ul><ul><li>a machine that sends invisible medicine into your body to give it some extra help. You cannot see, feel, taste or smell the medicine. </li></ul><ul><li>a nurse might draw on your body with a marker, like the ones you colour with, so they know where to put the medicine </li></ul><ul><li>machine is smaller than a elephant </li></ul><ul><li>takes less time than watching (favourite half hour tv show) </li></ul><ul><li>you have to stay very still so all the medicine only goes where it’s supposed to go </li></ul><ul><li>there might be a big bean bag to help you stay still – the medicine can still find you under there </li></ul><ul><li>there might be a mask, like you wear at Halloween, that helps you stay still </li></ul>
    13. Additional Tips <ul><li>Ask if parents can be in the monitoring room and talk to child through a microphone </li></ul><ul><li>Tell parents to dress children in loose, comfortable, cotton clothing </li></ul><ul><li>Distraction during radiation sessions (remember they can’t move) – ‘I Spy’ on the ceiling, healing images relaxation techniques </li></ul><ul><li>Photo books of radiation room, prep for all steps and senses OR prep for sedation </li></ul><ul><li>For chemo – assess their energy level, try expressive arts and storytelling </li></ul>
    14. Lumbar Puncture (Spinal Tap) <ul><li>Procedure that is performed in order to collect a sample of spinal fluid to be examined for signs of cancer relapse and methotrexate (chemotherapeutic agent which prevents chemo-filled blood from entering the brain) is administered into the spinal fluid to prevent cancer cells from spreading. A needle is used to extract spinal fluid. </li></ul><ul><li>Child curls up tightly so nurse can get needle between vertebrae (another nurse assists in positioning) </li></ul><ul><li>Area is cleaned </li></ul><ul><li>Needle is inserted </li></ul><ul><li>Then a tap is inserted to collect the fluid is inserted (may collect multiple vials) </li></ul><ul><li>Site is bandaged and child can leave – cannot bathe for 24 hours. </li></ul>
    15. Coping Techniques for a Lumbar Puncture <ul><li>Can freeze site with Emla cream </li></ul><ul><li>Facing away, so do distraction  blow bubbles, favorite toy, music, TV </li></ul>
    16. Portacaths <ul><li>A Portacath is a small chamber or reservoir that sits under your skin at the end of your central line. You can feel it, but unless you are very thin you cannot usually see it. When you need treatment, your nurse puts a needle into the chamber and gives you injections or attaches a drip. This stays in place for as long as you need treatment. Then your nurse will remove the needle until your next treatment. </li></ul><ul><li>Can deliver chemotherapy drugs quickly and efficiently through the entire body via the circulatory system, rather than through tissue, which can be damaging. </li></ul><ul><li>Emla cream can be used on young children to numb area before needle/drip. </li></ul>
    17. Portacaths
    18. Portacaths
    19. How Would You Explain a Portocath to a Child?
    20. Febrile Neutropenia <ul><li>The development of fever, often with other signs of infection, in a patient with neutropenia (an abnormally low white blood cell count) </li></ul><ul><li>Low blood cell count + high fever = febrile neutropenia </li></ul><ul><li>Caused by infection in 50% of cases </li></ul><ul><li>Considered a 'medical emergency’ can become rapidly fatal if not treated immediately </li></ul><ul><li>Recognized as a complication of chemotherapy when it is myelosuppressive (suppresses the bone marrow from producing blood cells) </li></ul><ul><li>Treated with antibiotics via IV </li></ul>
    21. What is Palliative Care? <ul><li>The World Health Organization defines palliative care as: </li></ul><ul><ul><li>“ Pa lliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” </li></ul></ul>
    22. Palliative Care <ul><ul><ul><li>Provides relief from pain and other distressing symptoms </li></ul></ul></ul><ul><ul><ul><li>Affirms life and regards dying as a normal process </li></ul></ul></ul><ul><ul><ul><li>Intends neither to hasten or postpone death </li></ul></ul></ul><ul><ul><ul><li>Integrates the psychological and spiritual aspects of patient care </li></ul></ul></ul><ul><ul><ul><li>Offers a support system to help the family cope during the patients illness and in their own bereavement </li></ul></ul></ul><ul><ul><ul><li>Uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated </li></ul></ul></ul><ul><ul><ul><li>Will enhance quality of life, and may also positively influence the course of illness </li></ul></ul></ul><ul><ul><ul><li>Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to be </li></ul></ul></ul>
    23. Death as a Process <ul><li>Death is unique for everyone and no one will experience it the same way. </li></ul>
    24. The Process of Dying <ul><li>The following signs show that a person with cancer is entering the final weeks of life: </li></ul><ul><ul><ul><ul><li>Progressive weakness and exhaustion
 </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Needing to sleep much of the time, often spending most of the day in bed or resting
 </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Weight loss and muscle wasting
 </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Loss of appetite and difficulty eating or swallowing fluids
 </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Decreased ability to talk and to concentrate
 </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Loss of interest in things that were previously important
 </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Loss of interest in the outside world and wanting only a few people nearby. The person with cancer may want only a few people to visit, or may need to limit the time spent with visitors. </li></ul></ul></ul></ul>
    25. The following traits are common during the final days of life: <ul><li>The body temperature lowers by a degree or more. </li></ul><ul><li>The blood pressure lowers. </li></ul><ul><li>The pulse becomes irregular and may slow down or speed up. </li></ul><ul><li>There is increased perspiration. </li></ul><ul><li>Breathing becomes slower, sometimes with very long pauses between breaths
 </li></ul><ul><li>
 </li></ul><ul><li>Congestion with gurgling or rattling sounds when breathing as the person becomes unable to clear secretions from the throat
 </li></ul><ul><li>Skin becomes cool, especially the hands and feet, and may turn a bluish color, </li></ul><ul><li>Dry mouth and dry or cracked lips
 </li></ul><ul><li>Decreased amount of urine
 </li></ul><ul><li>Incontinence (loss of bladder and bowel control)
 </li></ul><ul><li>Physical restlessness or repetitive, involuntary movements
 </li></ul><ul><li>Disorientation and confusion about time, place, and identity of people, including family and close friends
 </li></ul><ul><li>Hallucinations (seeing or hearing things that are not there). These are normal and are not a cause for concern unless they scare or upset the person with cancer.
 </li></ul><ul><li>Drifting in and out of consciousness, possibly entering a coma </li></ul>
    26. Palliative Care Associations <ul><li>Canadian Hospice Palliative Care Association </li></ul><ul><ul><li>Is the National association which provides leadership in hospice palliative care in Canada </li></ul></ul><ul><ul><li>CHPCA offers leadership in the pursuit of excellence in care for persons approaching death so that the burdens of suffering, loneliness and grief are lessened </li></ul></ul><ul><li>Hospice Association of Ontario </li></ul><ul><ul><li>The Hospice Association of Ontario (HAO) is Canada's largest volunteer hospice organization representing over 150 community-based volunteer organizations providing hospice care to clients of all ages with a multitude of life-threatening that provide terminal illnesses </li></ul></ul>
    27. Hospice Toronto <ul><li>25 King St West </li></ul><ul><li>Suite 1102 </li></ul><ul><li>Toronto, ON </li></ul><ul><li>M5L 1G3 </li></ul><ul><li>Tel: 416 364 1666 </li></ul><ul><li>Fax: 416 364 2231 </li></ul><ul><li>[email_address] </li></ul><ul><li>“ W h en you cannot add days to life, add life to days” </li></ul>
    28. They are committed to: <ul><li>Providing continuity of care through all phases of the client's illnesses </li></ul><ul><li>Offering services that are integrated with other community services </li></ul><ul><li>Connecting clients to the full range of support that they need </li></ul><ul><li>Educating clients and the public about the issues and choices regarding dying at home </li></ul><ul><li>Providing rewarding and meaningful experiences for our staff and volunteers </li></ul><ul><li>Ensuring that Hospice Toronto is welcoming and accessible to all the diverse communities within our area of service </li></ul><ul><li>Continued acknowledgment as a leader in palliative care </li></ul><ul><li>Advocacy for excellence in client care at all levels of service and social policy. </li></ul>
    29. In Home Support <ul><li>Hospice Toronto staff and volunteers offer physical, emotional, spiritual and practical support using a holistic model of care. </li></ul><ul><li>Through the work of their In Home Support Program, they seek to: </li></ul><ul><ul><li>Provide continuity of care </li></ul></ul><ul><ul><li>Offer services that are integrated with other community support services </li></ul></ul><ul><ul><li>Facilitate the choice of being cared for in the home of those with a life threatening illness </li></ul></ul><ul><ul><li>Connect clients to the full range of support they need </li></ul></ul><ul><ul><li>Educate clients and the public about important issues in hospice care and the multitude of options available to individuals and families </li></ul></ul><ul><ul><li>Ensure that Hospice Toronto is accessible to the diverse communities within our service area </li></ul></ul><ul><li>Advocate for excellence in end of life care </li></ul>
    30. Tammy Latner Centre for Palliative Care <ul><li>Joseph and Wolf Lebovic Health Complex </li></ul><ul><li>60 Murray Street, 4th Floor </li></ul><ul><li>Toronto, Ontario M5T 3L9 </li></ul><ul><li>Tel: 416 586-4800 Ext.: 7884 </li></ul><ul><li>Fax: 416 586-4804 </li></ul><ul><li>“ Helping people who are living with and dying from a terminal illness ” . </li></ul><ul><li>“ Wh ether in a patient’s home or in the hospital, our palliative care professionals work in consultation with the patient’s existing care team to provide the best possible care ” . </li></ul>
    31. Services and Supports <ul><li>Care in your home </li></ul><ul><li>Care at Mount Sinai Hospital </li></ul><ul><li>Care for children and their families </li></ul><ul><li>Their Max and Beatrice Wolfe Centre for Children’s Palliative Care and Grief is the only specialized centre in Ontario that offers medical and counseling support for dying children and their families in their home.  </li></ul><ul><li>Their Dr. Jay Grief Program educates and supports children who have a loved one who is dying or who has died. We use creative approaches to help children learn about dying and death, and to encourage them to ask questions and explore their feelings. Our counselors also help adults learn to speak with children about dying and death. </li></ul>
    32. Rogers House <ul><li>399 Smyth Road </li></ul><ul><li>Ottawa, ON </li></ul><ul><li>K1H 8L2 </li></ul><ul><li>Tel: 613-523-6300 ext 600 </li></ul><ul><li>Fax: 613-523-3617 </li></ul><ul><li>[email_address] </li></ul>
    33. Philosophy of Care <ul><li>Roger's House is about living life to the fullest. </li></ul><ul><li>The experience of a &quot;home away from home&quot; fosters freedom, security, pleasure, and quality of family life. </li></ul><ul><li>Children, youth and their families living with a progressive life limiting illness are entitled to access comprehensive palliative care services. </li></ul><ul><li>This timely, holistic, patient and family-focused, culturally sensitive care is enhanced by the experience of Roger's House. </li></ul>
    34. Acute End Of Life Care <ul><li>For children and families that choose to spend their final days together at Roger's House, End of Life Care is provided. </li></ul><ul><li>The Registered Nurses and Registered Practical Nurses are supported by the CHEO Palliative Outreach Team in providing pain and symptom management, emotional and spiritual support, as well as assistance with decision making. </li></ul><ul><li>Every effort is made to ensure ongoing quality of life for the child and the family. </li></ul>
    35. Hospital For Sick Children <ul><li>The Palliative and Bereavement Care Service at SickKids is composed of an interdisciplinary team which includes: a clinical nurse specialist, a palliative care physician, a social worker/coordinator and a music therapist. </li></ul><ul><li>The Service also draws on the expertise of other formal and informal caregivers such as: chaplains, a bioethicist, a therapeutic clown, physicians, pain experts and parents. </li></ul>
    36. Palliative & Bereavement Care Team <ul><li>The palliative and bereavement care service at Sick Kids is composed of an interdisciplinary team which includes a clinical nurse specialist, a palliative care physician, a social worker/coordinator and a music therapist </li></ul><ul><li>The service also draws on the expertise of other formal and informal caregivers such as chaplains, social workers, nurses, a bioethicist, a therapeutic clown, physicians, pain experts and parents </li></ul>
    37. <ul><li>The Palliative and Bereavement Care Service is also committed to close partnerships with community care teams including home nurses, hospices, community physicians and other hospitals and palliative care services. </li></ul><ul><li>Working with community and hospital team partners, the service facilitates comprehensive care planning for children throughout the continuum of the illness experience, including care within the home/community. </li></ul>
    38. <ul><li>Services available to families and health care teams are planned to include: inpatient, community and family consultation, collaborative community care, intensive symptom management, psychosocial and spiritual support, music and clown therapy, bereavement counseling and financial support. </li></ul>
    39. What they do <ul><li>They work with other health care teams at The Hospital for Sick Children (SickKids) and in the community to help with special concerns for children with life threatening conditions and their families:   </li></ul><ul><ul><li>Intensive pain and symptom management </li></ul></ul><ul><ul><li>Comfort care </li></ul></ul><ul><ul><li>Communication between family and primary care team </li></ul></ul><ul><ul><li>Quality of life </li></ul></ul><ul><ul><li>Coordination of care across inpatient, outpatient and home settings </li></ul></ul><ul><ul><li>Bereavement follow up </li></ul></ul><ul><ul><li>Support of family and professional caregivers </li></ul></ul><ul><ul><li>Financial support </li></ul></ul><ul><ul><li>Music Therapy </li></ul></ul>
    40. Parents <ul><li>The best and worst aspects of a family relationship will be expressed </li></ul><ul><li>Lifelong destructive patterns to intimate loving characteristics </li></ul><ul><li>Important for the coping with grief </li></ul>
    41. Emotions <ul><li>Anticipatory grief </li></ul><ul><li>Grief </li></ul><ul><ul><li>Shock </li></ul></ul><ul><ul><li>Angry sadness </li></ul></ul><ul><ul><li>Despair </li></ul></ul><ul><li>Abandonment </li></ul><ul><li>Isolation </li></ul><ul><li>Failure in their role as a parent and protector </li></ul><ul><li>Fear of coping with the child’s pain and death </li></ul><ul><li>Loss </li></ul><ul><ul><li>Of themself </li></ul></ul><ul><ul><li>Of the future their child would have </li></ul></ul>
    42. Interventions to manage Palliative Care and Death <ul><li>Address the specific parental feelings and needs </li></ul><ul><li>Affirm parents as loving and capable of making good decisions </li></ul><ul><li>Help the family stay connected with child until death </li></ul><ul><li>Facilitate communication </li></ul><ul><li>Help the family develop memories they can hold and cherish long after the child has died (maintain hope) </li></ul><ul><li>Help parents manage the palliative process and health care system </li></ul><ul><li>Help parents talk about funeral plans </li></ul><ul><li>Allow parents to make as many roles as possible </li></ul>
    43. Helping Parents talk to their Child about Dying <ul><li>Don’t underestimate what the child knows about their illness </li></ul><ul><li>Maintain open communication </li></ul><ul><li>Provide outlets for anger </li></ul><ul><li>Follow the child’s lead </li></ul><ul><li>Be honest with the child </li></ul><ul><li>Allow the child to say goodbye </li></ul><ul><li>Let the child share their feelings of grief and pain when ready </li></ul><ul><li>Help the child to live during the dying process (maintaining hope) </li></ul>
    44. Impact of a Diagnosis on a Child <ul><li>“ When I heard that I had leukemia, I turned pale with shock. I was scared of needles, blood, of seeing all the doctors, of what was going to happen to me. I was MAD about a lot of things: staying in the hospital, taking medicines, bone marrows, spinal taps, IVs, being awakened in the middle of the night. I was sad that I didn’t have my toys and that I was missing out on everything. I felt lonely and cried about not being at home and not being able to go outside. I also felt hope: getting better, going home, eating food from home, and seeing my friends.” (8-year-old boy) </li></ul>
    45. Irreversibly Altered Reality <ul><li>The diagnosis stands as a dividing line (a marker of ‘before and after’ ) </li></ul><ul><li>Ruptures the continuity between the past, present and future </li></ul><ul><li>Security from predictability is lost as the child is thrust into a world of uncertainty </li></ul><ul><li>Inability to take time for granted </li></ul><ul><li>represents a crucial loss </li></ul><ul><li>during childhood </li></ul>
    46. Stages of Learning About Illness <ul><li>Realization that “it” is a serious illness </li></ul><ul><li>Understanding of the names of drugs, uses, and side effects </li></ul><ul><li>Knowledge of the procedures and treatments (relationship between symptoms and procedures) </li></ul><ul><li>Realization that the disease is a series </li></ul><ul><li>of remissions and relapses </li></ul><ul><li>Understanding that the disease will cause </li></ul><ul><li>death when the drugs are no longer effective </li></ul>
    47. Changes in Self-Concept <ul><li>Seriously ill – observation of parents </li></ul><ul><li>after told diagnosis </li></ul><ul><li>Seriously ill and will get better – </li></ul><ul><ul><li>first remission </li></ul></ul><ul><li>Always ill and will get better – first relapse </li></ul><ul><li>Always ill and will never get better – several relapses and remissions </li></ul><ul><li>Dying (terminally ill) – death of a peer </li></ul>
    48. Perceptions of Recurrence <ul><li>Punishment for misdeed or not following treatment properly </li></ul><ul><li>Loss of hope </li></ul><ul><li>Death is unavoidable and fast </li></ul><ul><li>approaching </li></ul><ul><li>Establishing realistic goals and enabling concurrent care </li></ul>
    49. Perceptions of Death <ul><li>1-3 years: “Mommy, after I die, how long will it be until I’m alive again?” </li></ul><ul><li>3-5 years: “I have been a bad boy, so I have to die.” </li></ul><ul><li>5-10 years: “How will I die? Will it hurt? Is dying scary?” </li></ul><ul><li>10-13 years: “I’m afraid if I die my mom will just break down.” </li></ul><ul><li>14-18 years: “This is so unfair! I just need to be alone.” </li></ul>
    50. A Dying Child’s Grief <ul><li>“ I just wish that I had armfuls of time” (4-year-old child) </li></ul><ul><li>“ They all cry” (8-year-old child’s response to being asked what changed in his family after he became ill) </li></ul><ul><li>“ I’m afraid if I die my mom will just break down. I’m worried that when I die. I’ll miss my family, or forget them, or something. I don’t want to tell people that I’m going to die, or anything, because I don’t want to be treated differently” (13-year-old adolescent) </li></ul>
    51. A Dying Child’s Grief <ul><li>A child with a terminal illness is on a journey that most others in his/her support network have not been on </li></ul><ul><li>Children look to parents to guide them through this unknown territory, a task that most parents are not prepared (either emotionally or by experience) </li></ul><ul><li>Terminal illness sets the child apart from other children, placing the child in a world that is foreign, painful, and time-limited </li></ul><ul><li>Facing the end of life can therefore be a frightening, lonely experience for a child </li></ul>
    52. Emotions of a Dying Child <ul><li>Anger toward the illness and the deprivations it brings </li></ul><ul><li>Anger toward the parents/caregivers for their inability to make the illness go away </li></ul><ul><li>Fear of regression, loss of functioning </li></ul><ul><li>Fear of separation, loneliness, abandonment, and being forgotten </li></ul><ul><li>Fear of bodily mutilation </li></ul><ul><li>Sadness over current and future losses </li></ul><ul><li>Guilt for how the illness is impacting the family </li></ul><ul><li>Shame and embarrassment over the physical changes caused by the illness </li></ul><ul><li>Fear of the unknown </li></ul><ul><li>Fear of suffering and pain </li></ul>
    53. How To Support a Dying Child <ul><li>Be honest – do not underestimate the child’s capacity to understand </li></ul><ul><ul><li>Remember it is okay to say “I do not know” </li></ul></ul><ul><ul><li>Answer only what the child wants to know </li></ul></ul><ul><li>Minimize separation from parents </li></ul><ul><li>Be emotionally available – create open communication but do not force it </li></ul><ul><ul><li>Listen first, then offer support </li></ul></ul><ul><ul><li>Follow the child’s lead </li></ul></ul><ul><ul><li>Provide creative outlets for the child’s emotions </li></ul></ul>
    54. <ul><li>Encourage quality of life </li></ul><ul><li>Maintain discipline </li></ul><ul><li>Sustain hope </li></ul><ul><li>Help maintain peer friendships </li></ul><ul><li>Maintain familiar routines, or explain why routines must be changed </li></ul><ul><ul><li>Familiar schedules or daily activities provide a sense of security for the child. </li></ul></ul><ul><li>Provide privacy </li></ul><ul><ul><li>Adolescents and teens need to have their privacy respected, and their developing sexuality recognized and addressed </li></ul></ul>
    55. Play Therapy <ul><li>Physical self-expression </li></ul><ul><li>Tape recorders, play telephones, </li></ul><ul><li>and microphones </li></ul><ul><li>Stuffed animals </li></ul><ul><li>Puppets and dolls </li></ul>
    56. Art Therapy <ul><li>Five faces technique </li></ul><ul><li>Feeling Collages </li></ul><ul><li>Photography </li></ul>
    57. “ Word” Therapy <ul><li>Journals, letters, and poetry </li></ul><ul><li>Reading and storytelling </li></ul><ul><li>Sentence completion </li></ul><ul><li>Wishes and fears inventory </li></ul><ul><li>Some children…the Jimmy Green technique </li></ul>
    58. Other Activities – Legacy Building <ul><li>How would you like to be remembered? Think of me when… </li></ul><ul><li>Memory boxes </li></ul><ul><li>Quilt of Comfort </li></ul><ul><li>Gardening </li></ul><ul><li>Rituals (e.g. lighting a candle) </li></ul>
    59. When Death Is Near <ul><li>Behavioural and Emotional Changes </li></ul><ul><li>As the child confronts impending death, he or she may show signs of preparation and acceptance </li></ul><ul><ul><li>Giving gifts to be remembered </li></ul></ul><ul><ul><li>Letting loved ones know it is my time to go now </li></ul></ul><ul><li>The child’s actions or words are often quite matter-of-fact and their significance is not necessarily elaborated </li></ul><ul><li>The endpoint of the terminal phase is often marked by a turning inward on the part of the child. Their cognitive and emotional horizons may narrow, as they conserve all their energy simply for physical survival </li></ul><ul><li>A generalized irritability is not uncommon </li></ul>
    60. When Death is Near <ul><li>During the final few days, the child may experience visions of people or angels, and may talk with them. </li></ul><ul><ul><li>When death is near, caregivers may fear that it will not be a peaceful experience. Although pain and symptom management should be employed to the very end, it is helpful to remind the family that, usually, a child will not have a final outburst of pain or period of intense suffering. </li></ul></ul>
    61. Sibling Relationships <ul><li>  </li></ul><ul><li>The bond between siblings develops before birth </li></ul><ul><li>Impact of Hospitalization </li></ul><ul><ul><li>May view parents’ constant attention as overprotective </li></ul></ul><ul><ul><li>Feelings of responsibility </li></ul></ul><ul><ul><li>Especially difficult when treatment requires restricted social contact </li></ul></ul><ul><ul><li>Lack of knowledge and understanding can result in negative behaviours from sibling </li></ul></ul><ul><ul><li>Lack of contact with parents, may be emotionally unavailable </li></ul></ul>
    62. Sibling Presence in End-of-Life Care <ul><li>For many families idea of having a sibling present is overwhelming </li></ul><ul><ul><li>Important for siblings to be included; greatest factor in coping with a sibling’s death </li></ul></ul><ul><li>When a child is in palliative care, siblings become a priority for support </li></ul><ul><ul><li>Children have difficulties in the anticipatory side of grief work </li></ul></ul>
    63. Resources and Activities for Siblings <ul><ul><li>Educational photos, medical play </li></ul></ul><ul><ul><li>Playroom activities </li></ul></ul><ul><ul><li>Role modeling language and behaviours </li></ul></ul><ul><ul><li>Preparing for sights and sounds in the ICU or hospice </li></ul></ul><ul><ul><li>Memory building, concrete mementos, e.g. a stuffed animal </li></ul></ul><ul><ul><li>Memory boxes, scrapbooks, letters </li></ul></ul><ul><ul><li>Talking, singing, reading </li></ul></ul>
    64. Children’s Understanding of Death <ul><li>5 components of understanding: </li></ul><ul><ul><li>Universality </li></ul></ul><ul><ul><li>Irreversibility </li></ul></ul><ul><ul><li>Nonfunctionality </li></ul></ul><ul><ul><li>Causality </li></ul></ul><ul><ul><li>Noncorporeal continuation </li></ul></ul>
    65. Tim’s Understanding of Death <ul><li>6-9 years old </li></ul><ul><ul><li>Begins to understand the concept in an adult way </li></ul></ul><ul><ul><li>Feels it happens to others, not within own system </li></ul></ul><ul><ul><li>May be superstitious, fearful of death </li></ul></ul><ul><ul><li>May be uncomfortable in expressing own feelings </li></ul></ul><ul><ul><li>Worries that other important people may die </li></ul></ul>
    66. Talking to Children About Death <ul><li>Involve parents/caregivers in the decision to speak to child about death of a sibling, acknowledge own grief at the outset </li></ul><ul><ul><li>Avoid “conspiracy of silence” </li></ul></ul><ul><ul><li>Accurate, factual information that is developmentally appropriate </li></ul></ul><ul><ul><li>Clear, concise explanations </li></ul></ul><ul><ul><li>Ask children what they know of the situation </li></ul></ul><ul><ul><li>Explore feelings by asking “What do you think?”—Encourage child to answer own questions </li></ul></ul><ul><ul><li>Avoid euphemisms and clichés </li></ul></ul>
    67. Other Considerations <ul><li>Limit the number of people in the room, to encourage child to ask questions, express self </li></ul><ul><li>Identify family members who are effective supports, available to child </li></ul><ul><li>Point out all the people who care and are available to child </li></ul>
    68. Coping With the Death of a Sibling <ul><li>3 Principles that impact coping ability: </li></ul><ul><ul><li>Direct Action </li></ul></ul><ul><ul><li>Predictability </li></ul></ul><ul><ul><li>Affiliation </li></ul></ul>
    69. Other Behaviours <ul><ul><li>Psychophysiological </li></ul></ul><ul><ul><li>Sleeping difficulties </li></ul></ul><ul><ul><li>Change in appetite </li></ul></ul><ul><ul><li>Increased anxiety, aggression, attention seeking behaviour </li></ul></ul><ul><ul><li>Decreased concentration, socially withdrawn </li></ul></ul><ul><ul><li>Hypermaturity </li></ul></ul>
    70. Common Feelings <ul><li>Guilt, for escaping the disease or magical thinking </li></ul><ul><li>Regret, past disagreements etc </li></ul><ul><li>Relief </li></ul><ul><li>Children communicate best through play and creative activities </li></ul>
    71. Wolfelt’s 6 Reconciliation Needs of Mourning <ul><li>Acknowledge the reality of death </li></ul><ul><li>Move towards the pain of the loss while being nurtured </li></ul><ul><li>Convert the relationship with the person from one of presence to one of memory </li></ul><ul><li>Develop a new self-identity based on life without the person who has died </li></ul><ul><li>Relate the experience of death to a context of meaning </li></ul><ul><li>Experience a continued supportive adult presence in future years </li></ul>
    72. The Issue of Identity <ul><li>Roles played by each sibling impact the family structure </li></ul><ul><ul><li>Altered relationships between surviving siblings and family </li></ul></ul><ul><ul><li>Loss of a playmate, confidante, rival, role model, friend </li></ul></ul><ul><ul><li>Loss of “old” part of self that was attached to the sibling </li></ul></ul><ul><ul><li>New logistical roles, chores etc; confusion when a new person takes on these roles </li></ul></ul>
    73. Identity, Continued <ul><li>Changes in Personal View of Self </li></ul><ul><ul><li>Am I still a brother/sister? </li></ul></ul><ul><ul><li>Awareness of own mortality </li></ul></ul><ul><ul><li>Child may think and feel in foreign ways </li></ul></ul><ul><li>Regressive self-identity </li></ul><ul><ul><li>Increased dependence, helplessness </li></ul></ul><ul><ul><li>Making sense of this new self </li></ul></ul>
    74. Support for Children After a Sibling’s Death <ul><li>Important to collaborate with teachers/child care professionals to update on what is going on </li></ul><ul><li>Support Groups for siblings and families </li></ul><ul><ul><li>Family-centered </li></ul></ul><ul><ul><li>Open-ended </li></ul></ul><ul><ul><li>Child-directed activities, legacy building </li></ul></ul><ul><ul><li>Developmentally appropriate groupings </li></ul></ul><ul><li>Interventions </li></ul><ul><ul><li>Physical activity </li></ul></ul><ul><ul><li>Creative outlets </li></ul></ul><ul><ul><li>Memory building, legacy building </li></ul></ul>
    75. Grandparent’s Grief <ul><li>Loss of a grandchild involves multiple sources of pain: </li></ul><ul><ul><li>Loss of the grandchild </li></ul></ul><ul><ul><li>Mourning for one’s own child </li></ul></ul><ul><ul><li>Mourning for oneself </li></ul></ul><ul><ul><li>Survivor guilt </li></ul></ul><ul><ul><li>Being unable to protect family from pain </li></ul></ul><ul><ul><li>Often have already experienced multiple deaths; parents, siblings, spouses, friends </li></ul></ul>
    76. Themes in Grandparents’ Experiences <ul><ul><li>A “place” for mourning </li></ul></ul><ul><ul><li>Accompanying child during illness </li></ul></ul><ul><ul><li>Parting from grandchild </li></ul></ul><ul><ul><li>Bereaved extended family </li></ul></ul><ul><ul><li>Strained relationships with own children </li></ul></ul><ul><ul><li>Return to living </li></ul></ul>
    77. The Impact of a Child’s Death on Hospital Staff <ul><li>Important to acknowledge stresses and strains on staff: </li></ul><ul><ul><li>Most common form of stress identified by staff is witnessing children in physical and emotional pain and distress </li></ul></ul><ul><ul><ul><li>Lack of resources </li></ul></ul></ul><ul><ul><ul><li>Difficulties in staff communication </li></ul></ul></ul><ul><ul><li>Vicarious trauma—internalize families’ pain </li></ul></ul><ul><ul><li>Perceive unfairness of child’s death </li></ul></ul><ul><ul><li>Feelings of vulnerability as a parent oneself </li></ul></ul>
    78. Strategies for Staff <ul><ul><li>Healthy awareness of own personal loss </li></ul></ul><ul><ul><li>Debriefing </li></ul></ul><ul><ul><li>Participation in memorial services </li></ul></ul><ul><ul><li>Support groups </li></ul></ul><ul><ul><li>Educational opportunities, in-services, ongoing training </li></ul></ul>
    79. Questions? Comments? <ul><li>Thank you! </li></ul>

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