Case Study: Oncology Patient at End-of-Life Care

By Brian, Heather, Kate & Madison

AgendaAgenda

Review of the case studyReview of the case study ObjectivesObjectives Medical Aspects of Cancer TreatmentMedical Aspects of Cancer Treatment The Process of DeathThe Process of Death Palliative CarePalliative Care Parents’ PerspectivesParents’ Perspectives Patients’ PerspectivesPatients’ Perspectives Siblings’ and Extended Families’ PerspectiveSiblings’ and Extended Families’ Perspective Hospital Staff’s PerspectiveHospital Staff’s Perspective

ObjectivesObjectives

To understand the treatments oncology patients To understand the treatments oncology patients may experience throughout their illnessmay experience throughout their illness

To gain a comprehensive awareness of end-of-life To gain a comprehensive awareness of end-of-life processes and experiences, as well as available processes and experiences, as well as available palliative care resources in Canadapalliative care resources in Canada

To understand the process of dying through the To understand the process of dying through the eyes of a patient, a parent, a sibling and a eyes of a patient, a parent, a sibling and a grandparentgrandparent

To understand how healthcare professionals can To understand how healthcare professionals can cope with the death of a pediatric patientcope with the death of a pediatric patient

Acute lymphoblastic Acute lymphoblastic leukemialeukemia

Cancer of the white blood cells characterized by excess Cancer of the white blood cells characterized by excess lymphoblastslymphoblasts

Most common in childhood with a peak incidence at 2-5 Most common in childhood with a peak incidence at 2-5 years of age, and another peak in old ageyears of age, and another peak in old age

Accounts for approximately 80% of all childhood leukemia Accounts for approximately 80% of all childhood leukemia cases, making it the most common type of childhood cases, making it the most common type of childhood cancer (in the US)cancer (in the US)

Cure rate in children is 85% Cure rate in children is 85%

Acute' refers to the relatively short time course of the Acute' refers to the relatively short time course of the disease (being fatal in as little as a few weeks if left disease (being fatal in as little as a few weeks if left untreated) to differentiate it from the very different untreated) to differentiate it from the very different disease of Chronic Lymphocytic Leukemia which has a disease of Chronic Lymphocytic Leukemia which has a potential time course of many years. potential time course of many years.

SymptomsSymptoms

Initial symptoms are not specific to ALL, but worsen to the point that medical help 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 is sought. The signs and symptoms of ALL are variable but follow from bone marrow replacement and/or organ infiltration.marrow replacement and/or organ infiltration.

Generalized weakness and fatigueGeneralized weakness and fatigue

AnemiaAnemia

Frequent or unexplained fever and infectionsFrequent or unexplained fever and infections

Weight loss and/or loss of appetiteWeight loss and/or loss of appetite

Excessive and unexplained bruisingExcessive and unexplained bruising

Bone pain, joint pains Bone pain, joint pains

Shortness of BreatheShortness of Breathe

Enlarged lymph nodes, liver and/or spleenEnlarged lymph nodes, liver and/or spleen

Pitting edema (swelling) in the lower limbs and/or abdomenPitting edema (swelling) in the lower limbs and/or abdomen

Petechiae, which are tiny red spots or lines in the skin due to low platelet Petechiae, which are tiny red spots or lines in the skin due to low platelet levelslevels

ChemotherapyChemotherapy

Chemotherapy is a method of treating cancer by using one drug Chemotherapy is a method of treating cancer by using one drug or a combination of drugs. or a combination of drugs.

These powerful drugs work by slowing or stopping the cancer These powerful drugs work by slowing or stopping the cancer cells from growing, spreading or multiplying to other parts of the cells from growing, spreading or multiplying to other parts of the body.body.

Treats whole body at once, unlike targeted treatments such as Treats whole body at once, unlike targeted treatments such as radiation, so whole body feels the effects of treatment. radiation, so whole body feels the effects of treatment.

Is usually given on an outpatient basis, but may involve hospital Is usually given on an outpatient basis, but may involve hospital stay for young childrenstay for young children

These drugs can damage healthy cells and the immune system These drugs can damage healthy cells and the immune system in addition to cancerous cells. This can cause many side effects in addition to cancerous cells. This can cause many side effects such as: appetite/weight loss, hair loss, nausea and vomiting, such as: appetite/weight loss, hair loss, nausea and vomiting, fatigue, memory loss, flu-like symptoms and aches, mouth sores, fatigue, memory loss, flu-like symptoms and aches, mouth sores, constipation or diarrhea, difficulty swallowing, kidney/urinary constipation or diarrhea, difficulty swallowing, kidney/urinary tract or bladder infections, etc. tract or bladder infections, etc.

Goals of ChemotherapyGoals of Chemotherapy

A doctor may prescribe chemotherapy for a cancer patient to A doctor may prescribe chemotherapy for a cancer patient to achieve any of five treatment goals:achieve any of five treatment goals:

1. To destroy the cancer cells.1. To destroy the cancer cells.

2. To shrink a tumor before other treatments 2. To shrink a tumor before other treatments

3. To destroy residual cancer cells after other treatments 3. To destroy residual cancer cells after other treatments

4. To prepare the patient for a bone marrow or stem cell 4. To prepare the patient for a bone marrow or stem cell transplant. Some cancers can be treated with bone marrow or transplant. Some cancers can be treated with bone marrow or stem cell transplants from a donor. Before the transplants take stem cell transplants from a donor. Before the transplants take place, the cancer patient’s original bone marrow is destroyed place, the cancer patient’s original bone marrow is destroyed using high doses of chemotherapy drugs.using high doses of chemotherapy drugs.

5. To relieve cancer symptoms (palliative chemotherapy). In 5. To relieve cancer symptoms (palliative chemotherapy). In some cases, chemotherapy can reduce the pain and other some cases, chemotherapy can reduce the pain and other symptoms of cancer.symptoms of cancer.

How is Chemotherapy How is Chemotherapy Given?Given?

1) Orally – many drugs with very strict schedule1) Orally – many drugs with very strict schedule

2) By Injection - IV, catheder, port-o-cath2) By Injection - IV, catheder, port-o-cath

RadiationRadiation

Radiation therapy is the use of a certain type of energy (called ionizing radiation) Radiation therapy is the use of a certain type of energy (called ionizing radiation) to kill cancer cells and shrink tumors.to kill cancer cells and shrink tumors.

Same as a regular x-ray but in much higher doses of radioactive energy, that are Same as a regular x-ray but in much higher doses of radioactive energy, that are damaging to healthy tissue damaging to healthy tissue

The goal of radiation therapy is to damage as many cancer cells as possible, The goal of radiation therapy is to damage as many cancer cells as possible, while limiting harm to nearby healthy tissue. while limiting harm to nearby healthy tissue.

Takes about 15-30 minutesTakes about 15-30 minutes

Usually visit the hospital or treatment center as outpatients 4 to 5 days a week Usually visit the hospital or treatment center as outpatients 4 to 5 days a week for several weeksfor several weeks

May require a CT scan to determine the exact location of cancer cells to target May require a CT scan to determine the exact location of cancer cells to target (called a ‘simulation’(called a ‘simulation’

M nurse will draw or ‘tattoo’ with a marker the area defined for treatmentM nurse will draw or ‘tattoo’ with a marker the area defined for treatment

It takes days or weeks of treatment before cancer cells start to die. Then, cancer 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.cells keep dying for weeks or months after radiation therapy ends.

To keep healthy parts healthy To keep healthy parts healthy use lower doses, spread out over time, target use lower doses, spread out over time, target only specific area, use drugs to counter effects (common one is to stimulate only specific area, use drugs to counter effects (common one is to stimulate saliva glands)saliva glands)

Things You Should Things You Should Know About Radiation Know About Radiation

TreatmentTreatment After you receive radiation treatment, you need follow-up After you receive radiation treatment, you need follow-up

appointments for the rest of your life to monitor cell growth. This appointments for the rest of your life to monitor cell growth. This is done with CT, MRI, PET, X-ray and blood tests. is done with CT, MRI, PET, X-ray and blood tests.

Patients need to be fitted for a special radiation mask that is 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 attached to the table and helps keep their head still and in place during treatment during treatment scary! scary!

For treatment of the body, a Vac-Loc bag, or big beanbag For treatment of the body, a Vac-Loc bag, or big beanbag molded over your body, will be used to keep your body still molded over your body, will be used to keep your body still also scary! also scary!

Children may be sedated if they cannot keep stillChildren may be sedated if they cannot keep still

To prevent unnecessary radiation exposure, parents aren't To prevent unnecessary radiation exposure, parents aren't allowed in the treatment roomallowed in the treatment room

Side effects Side effects skin damage (red, sensitive, irritated, swelling) at skin damage (red, sensitive, irritated, swelling) at site and more sensitive to sunlightsite and more sensitive to sunlight

RadiationRadiation

Explaining Treatments Explaining Treatments to Childrento Children

Chemo is like taking lots of medicine to help the inside of your body be 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 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 working so hard at fighting the cancer cells that the outside feels tired or sick.sick.

Radiation is like:Radiation is like: a machine that sends invisible medicine into your body to give it some a machine that sends invisible medicine into your body to give it some

extra help. You cannot see, feel, taste or smell the medicine. extra help. You cannot see, feel, taste or smell the medicine. a nurse might draw on your body with a marker, like the ones you colour a nurse might draw on your body with a marker, like the ones you colour

with, so they know where to put the medicinewith, so they know where to put the medicine machine is smaller than a elephantmachine is smaller than a elephant takes less time than watching (favourite half hour tv show)takes less time than watching (favourite half hour tv show) you have to stay very still so all the medicine only goes where it’s you have to stay very still so all the medicine only goes where it’s

supposed to gosupposed to go there might be a big bean bag to help you stay still – the medicine can there might be a big bean bag to help you stay still – the medicine can

still find you under therestill find you under there there might be a mask, like you wear at Halloween, that helps you stay there might be a mask, like you wear at Halloween, that helps you stay

still still

Additional TipsAdditional Tips

Ask if parents can be in the monitoring room and Ask if parents can be in the monitoring room and talk to child through a microphonetalk to child through a microphone

Tell parents to dress children in loose, Tell parents to dress children in loose, comfortable, cotton clothingcomfortable, cotton clothing

Distraction during radiation sessions (remember Distraction during radiation sessions (remember they can’t move) – ‘I Spy’ on the ceiling, healing they can’t move) – ‘I Spy’ on the ceiling, healing images relaxation techniques images relaxation techniques

Photo books of radiation room, prep for all steps Photo books of radiation room, prep for all steps and senses OR prep for sedationand senses OR prep for sedation

For chemo – assess their energy level, try For chemo – assess their energy level, try expressive arts and storytellingexpressive arts and storytelling

Lumbar Puncture Lumbar Puncture (Spinal Tap)(Spinal Tap)

Procedure that is performed in order to collect a sample of spinal Procedure that is performed in order to collect a sample of spinal fluid to be examined for signs of cancer relapse and fluid to be examined for signs of cancer relapse and methotrexate (chemotherapeutic agent which prevents chemo-methotrexate (chemotherapeutic agent which prevents chemo-filled blood from entering the brain) is administered into the filled blood from entering the brain) is administered into the spinal fluid to prevent cancer cells from spreading. A needle is spinal fluid to prevent cancer cells from spreading. A needle is used to extract spinal fluid. used to extract spinal fluid.

Child curls up tightly so nurse can get needle between vertebrae Child curls up tightly so nurse can get needle between vertebrae (another nurse assists in positioning)(another nurse assists in positioning)

Area is cleanedArea is cleaned

Needle is insertedNeedle is inserted

Then a tap is inserted to collect the fluid is inserted (may collect Then a tap is inserted to collect the fluid is inserted (may collect multiple vials)multiple vials)

Site is bandaged and child can leave – cannot bathe for 24 Site is bandaged and child can leave – cannot bathe for 24 hours. hours.

Coping Techniques for a Coping Techniques for a Lumbar PunctureLumbar Puncture

Can freeze site with Emla cream Can freeze site with Emla cream

Facing away, so do distraction Facing away, so do distraction blow blow bubbles, favorite toy, music, TVbubbles, favorite toy, music, TV

PortacathsPortacaths

A Portacath is a small chamber or reservoir that sits A Portacath is a small chamber or reservoir that sits under your skin at the end of your central line. You under your skin at the end of your central line. You can feel it, but unless you are very thin you cannot can feel it, but unless you are very thin you cannot usually see it. When you need treatment, your usually see it. When you need treatment, your nurse puts a needle into the chamber and gives you nurse puts a needle into the chamber and gives you injections or attaches a drip. This stays in place for injections or attaches a drip. This stays in place for as long as you need treatment. Then your nurse will as long as you need treatment. Then your nurse will remove the needle until your next treatment.remove the needle until your next treatment.

Can deliver chemotherapy drugs quickly and Can deliver chemotherapy drugs quickly and efficiently through the entire body via the efficiently through the entire body via the circulatory system, rather than through tissue, circulatory system, rather than through tissue, which can be damaging.which can be damaging.

Emla cream can be used on young children to numb Emla cream can be used on young children to numb area before needle/drip.area before needle/drip.

PortacathsPortacaths

PortacathsPortacaths

How Would You Explain How Would You Explain a Portocath to a Child?a Portocath to a Child?

Febrile NeutropeniaFebrile Neutropenia

The development of fever, often with other signs of The development of fever, often with other signs of infection, in a patient with neutropenia (an abnormally infection, in a patient with neutropenia (an abnormally low white blood cell count) low white blood cell count)

Low blood cell count + high fever = febrile Low blood cell count + high fever = febrile neutropenianeutropenia

Caused by infection in 50% of casesCaused by infection in 50% of cases

Considered a 'medical emergency’ can become rapidly Considered a 'medical emergency’ can become rapidly fatal if not treated immediatelyfatal if not treated immediately

Recognized as a complication of chemotherapy when it Recognized as a complication of chemotherapy when it is myelosuppressive (suppresses the bone marrow is myelosuppressive (suppresses the bone marrow from producing blood cells)from producing blood cells)

Treated with antibiotics via IVTreated with antibiotics via IV

What is Palliative Care?What is Palliative Care?

The The World Health OrganizationWorld Health Organization defines palliative care as:defines palliative care as: ““PaPalliative care is an approach that improves the lliative care is an approach that improves the

quality of life of patients and their families facing the quality of life of patients and their families facing the problems associated with life-threatening illness, problems associated with life-threatening illness, through the prevention and relief of suffering by through the prevention and relief of suffering by means of early identification and impeccable means of early identification and impeccable assessment and treatment of pain and other problems, assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”physical, psychosocial and spiritual.”

Palliative CarePalliative Care

Provides relief from pain and other distressing symptoms Provides relief from pain and other distressing symptoms Affirms life and regards dying as a normal process Affirms life and regards dying as a normal process Intends neither to hasten or postpone death Intends neither to hasten or postpone death Integrates the psychological and spiritual aspects of patient care Integrates the psychological and spiritual aspects of patient care Offers a support system to help the family cope during the Offers a support system to help the family cope during the

patients illness and in their own bereavement patients illness and in their own bereavement Uses a team approach to address the needs of patients and their Uses a team approach to address the needs of patients and their

families, including bereavement counseling, if indicated families, including bereavement counseling, if indicated Will enhance quality of life, and may also positively influence the Will enhance quality of life, and may also positively influence the

course of illness course of illness Is applicable early in the course of illness, in conjunction with Is applicable early in the course of illness, in conjunction with

other therapies that are intended to prolong life, such as other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those chemotherapy or radiation therapy, and includes those investigations needed to beinvestigations needed to be

Death as a ProcessDeath as a Process

Death is unique for everyone and no one will experience it Death is unique for everyone and no one will experience it the same way.the same way.

The Process of DyingThe Process of Dying

The following signs show that a person with The following signs show that a person with cancer is entering the final weeks of life:cancer is entering the final weeks of life:

Progressive weakness and exhaustionProgressive weakness and exhaustion Needing to sleep much of the time, often spending most of the Needing to sleep much of the time, often spending most of the

day in bed or restingday in bed or resting Weight loss and muscle wastingWeight loss and muscle wasting Loss of appetite and difficulty eating or swallowing fluidsLoss of appetite and difficulty eating or swallowing fluids Decreased ability to talk and to concentrateDecreased ability to talk and to concentrate Loss of interest in things that were previously importantLoss of interest in things that were previously important Loss of interest in the outside world and wanting only a few Loss of interest in the outside world and wanting only a few

people nearby. The person with cancer may want 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 people to visit, or may need to limit the time spent with visitors.visitors.

The following traits are common during the final days of The following traits are common during the final days of life:life: The body temperature The body temperature

lowers by a degree or more.lowers by a degree or more. The blood pressure lowers.The blood pressure lowers. The pulse becomes irregular The pulse becomes irregular

and may slow down or and may slow down or speed up.speed up.

There is increased There is increased perspiration.perspiration.

Breathing becomes slower, Breathing becomes slower, sometimes with very long sometimes with very long pauses between breathspauses between breaths

Congestion with gurgling or Congestion with gurgling or rattling rattling sounds when breathing as the sounds when breathing as the person becomes unable to clear person becomes unable to clear secretions from the throatsecretions from the throat

Skin becomes cool, especially the Skin becomes cool, especially the hands and feet, and may turn a hands and feet, and may turn a bluish color, bluish color,

Dry mouth and dry or cracked lipsDry mouth and dry or cracked lips Decreased amount of urineDecreased amount of urine Incontinence (loss of bladder and Incontinence (loss of bladder and

bowel control)bowel control) Physical restlessness or repetitive, Physical restlessness or repetitive,

involuntary movementsinvoluntary movements Disorientation and confusion about Disorientation and confusion about

time, place, and identity of people, time, place, and identity of people, including family and close friendsincluding family and close friends

Hallucinations (seeing or hearing Hallucinations (seeing or hearing things that are not there). These things that are not there). These are normal and are not a cause for are normal and are not a cause for concern unless they scare or upset concern unless they scare or upset the person with cancer.the person with cancer.

Drifting in and out of Drifting in and out of consciousness, possibly entering a consciousness, possibly entering a comacoma

Palliative Care Palliative Care AssociationsAssociations

Canadian Hospice Palliative Care AssociationCanadian Hospice Palliative Care Association Is the National association which provides leadership in Is the National association which provides leadership in

hospice palliative care in Canadahospice palliative care in Canada CHPCA offers leadership in the pursuit of excellence in CHPCA offers leadership in the pursuit of excellence in

care for persons approaching death so that the burdens of care for persons approaching death so that the burdens of suffering, loneliness and grief are lessenedsuffering, loneliness and grief are lessened

Hospice Association of OntarioHospice Association of Ontario The Hospice Association of Ontario (HAO) is Canada's The Hospice Association of Ontario (HAO) is Canada's

largest volunteer hospice organization representing over largest volunteer hospice organization representing over 150 community-based volunteer organizations providing 150 community-based volunteer organizations providing hospice care to clients of all ages with a multitude of life-hospice care to clients of all ages with a multitude of life-threatening that provide terminal illnessesthreatening that provide terminal illnesses

Hospice TorontoHospice Toronto

25 King St West25 King St WestSuite 1102Suite 1102

Toronto, ONToronto, ONM5L 1G3M5L 1G3

Tel: 416 364 1666 Tel: 416 364 1666 Fax: 416 364 2231Fax: 416 364 2231

info@hospicetoronto.cainfo@hospicetoronto.ca

““WWhhen you cannot add days to life, add life to days”en you cannot add days to life, add life to days”

They are committed to:They are committed to:

Providing continuity of care through all phases of the client's illnesses Providing continuity of care through all phases of the client's illnesses

Offering services that are integrated with other community services Offering services that are integrated with other community services

Connecting clients to the full range of support that they need Connecting clients to the full range of support that they need

Educating clients and the public about the issues and choices regarding dying at Educating clients and the public about the issues and choices regarding dying at home home

Providing rewarding and meaningful experiences for our staff and volunteers Providing rewarding and meaningful experiences for our staff and volunteers

Ensuring that Hospice Toronto is welcoming and accessible to all the diverse Ensuring that Hospice Toronto is welcoming and accessible to all the diverse communities within our area of service communities within our area of service

Continued acknowledgment as a leader in palliative care Continued acknowledgment as a leader in palliative care

Advocacy for excellence in client care at all levels of service and social policy.Advocacy for excellence in client care at all levels of service and social policy.

In Home SupportIn Home Support

Hospice Toronto staff and volunteers offer physical, emotional, Hospice Toronto staff and volunteers offer physical, emotional, spiritual and practical support using a holistic model of care. spiritual and practical support using a holistic model of care.

Through the work of their In Home Support Program, they seek to:Through the work of their In Home Support Program, they seek to: Provide continuity of care Provide continuity of care Offer services that are integrated with other community support Offer services that are integrated with other community support

services services Facilitate the choice of being cared for in the home of those with a Facilitate the choice of being cared for in the home of those with a

life threatening illness life threatening illness Connect clients to the full range of support they need Connect clients to the full range of support they need Educate clients and the public about important issues in hospice care Educate clients and the public about important issues in hospice care

and the multitude of options available to individuals and families and the multitude of options available to individuals and families Ensure that Hospice Toronto is accessible to the diverse communities Ensure that Hospice Toronto is accessible to the diverse communities

within our service areawithin our service area

Advocate for excellence in end of life careAdvocate for excellence in end of life care

Tammy Latner Centre for Tammy Latner Centre for Palliative CarePalliative Care

Joseph and Wolf Lebovic Health ComplexJoseph and Wolf Lebovic Health Complex60 Murray Street, 4th Floor60 Murray Street, 4th FloorToronto, Ontario M5T 3L9Toronto, Ontario M5T 3L9

Tel: 416 586-4800 Ext.: 7884Tel: 416 586-4800 Ext.: 7884

Fax: 416 586-4804Fax: 416 586-4804

““Helping people who are living with and dying from a Helping people who are living with and dying from a terminal illnessterminal illness””..

““WhWhether in a patient’s home or in the hospital, our ether in a patient’s home or in the hospital, our palliative care professionals work in consultation with the palliative care professionals work in consultation with the patient’s existing care team to provide the best possible patient’s existing care team to provide the best possible carecare””..

Services and SupportsServices and Supports

Care in your homeCare in your home Care at Mount Sinai HospitalCare at Mount Sinai Hospital Care for children and their familiesCare for children and their families Their Their Max and Beatrice Wolfe CentreMax and Beatrice Wolfe Centre for Children’s Palliative for Children’s Palliative

Care and Grief is the only specialized centre in Ontario that offers Care and Grief is the only specialized centre in Ontario that offers medical and counseling support for dying children and their families medical and counseling support for dying children and their families in their home. in their home. 

Their Their Dr. Jay Grief ProgramDr. Jay Grief Program educates and supports children who educates and supports children who have a loved one who is dying or who has died. We use creative 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 approaches to help children learn about dying and death, and to encourage them to ask questions and explore their feelings. Our encourage them to ask questions and explore their feelings. Our counselors also help adults learn to speak with children about dying counselors also help adults learn to speak with children about dying and death.and death.

Rogers HouseRogers House

399 Smyth Road399 Smyth RoadOttawa, ONOttawa, ON

K1H 8L2K1H 8L2Tel: 613-523-6300 ext 600Tel: 613-523-6300 ext 600

Fax: 613-523-3617Fax: 613-523-3617info@rogershouse.cainfo@rogershouse.ca

Philosophy of CarePhilosophy of Care

Roger's House is about living life to the fullest. Roger's House is about living life to the fullest.

The experience of a "home away from home" fosters The experience of a "home away from home" fosters freedom, security, pleasure, and quality of family freedom, security, pleasure, and quality of family life. life.

Children, youth and their families living with a Children, youth and their families living with a progressive life limiting illness are entitled to access progressive life limiting illness are entitled to access comprehensive palliative care services. comprehensive palliative care services.

This timely, holistic, patient and family-focused, This timely, holistic, patient and family-focused, culturally sensitive care is enhanced by the culturally sensitive care is enhanced by the experience of Roger's House.experience of Roger's House.

Acute End Of Life CareAcute End Of Life Care

For children and families that choose to spend For children and families that choose to spend their final days together at Roger's House, End of their final days together at Roger's House, End of Life Care is provided. Life Care is provided.

The Registered Nurses and Registered Practical The Registered Nurses and Registered Practical Nurses are supported by the CHEO Palliative Nurses are supported by the CHEO Palliative Outreach Team in providing pain and symptom Outreach Team in providing pain and symptom management, emotional and spiritual support, as management, emotional and spiritual support, as well as assistance with decision making. well as assistance with decision making.

Every effort is made to ensure ongoing quality of Every effort is made to ensure ongoing quality of life for the child and the family.life for the child and the family.

Hospital For Sick Hospital For Sick ChildrenChildren

The Palliative and Bereavement Care Service at The Palliative and Bereavement Care Service at SickKids is composed of an interdisciplinary SickKids is composed of an interdisciplinary team which includes: a clinical nurse specialist, a team which includes: a clinical nurse specialist, a palliative care physician, a social palliative care physician, a social worker/coordinator and a music therapist. worker/coordinator and a music therapist.

The Service also draws on the expertise of other The Service also draws on the expertise of other formal and informal caregivers such as: formal and informal caregivers such as: chaplains, a bioethicist, a therapeutic clown, chaplains, a bioethicist, a therapeutic clown, physicians, pain experts and parents.physicians, pain experts and parents.

Palliative & Palliative & Bereavement Care Bereavement Care

TeamTeam The palliative and bereavement care service at The palliative and bereavement care service at

Sick Kids is composed of an interdisciplinary Sick Kids is composed of an interdisciplinary team which includes a clinical nurse specialist, team which includes a clinical nurse specialist, a palliative care physician, a social a palliative care physician, a social worker/coordinator and a music therapistworker/coordinator and a music therapist

The service also draws on the expertise of The service also draws on the expertise of other formal and informal caregivers such as other formal and informal caregivers such as chaplains, social workers, nurses, a bioethicist, chaplains, social workers, nurses, a bioethicist, a therapeutic clown, physicians, pain experts a therapeutic clown, physicians, pain experts and parentsand parents

The Palliative and Bereavement Care Service is The Palliative and Bereavement Care Service is also committed to close partnerships with also committed to close partnerships with community care teams including home nurses, community care teams including home nurses, hospices, community physicians and other hospices, community physicians and other hospitals and palliative care services. hospitals and palliative care services.

Working with community and hospital team Working with community and hospital team partners, the service facilitates comprehensive partners, the service facilitates comprehensive care planning for children throughout the care planning for children throughout the continuum of the illness experience, including continuum of the illness experience, including care within the home/community. care within the home/community.

Services available to families and health care Services available to families and health care teams are planned to include: inpatient, teams are planned to include: inpatient, community and family consultation, community and family consultation, collaborative community care, intensive collaborative community care, intensive symptom management, psychosocial and symptom management, psychosocial and spiritual support, music and clown therapy, spiritual support, music and clown therapy, bereavement counseling and financial support. bereavement counseling and financial support.

What they doWhat they do

They work with other health care teams at The Hospital for They work with other health care teams at The Hospital for Sick Children (SickKids) and in the community to help with Sick Children (SickKids) and in the community to help with special concerns for children with life threatening special concerns for children with life threatening conditions and their families:conditions and their families:   Intensive pain and symptom management Intensive pain and symptom management Comfort care Comfort care Communication between family and primary care team Communication between family and primary care team Quality of life Quality of life Coordination of care across inpatient, outpatient and home Coordination of care across inpatient, outpatient and home

settings settings Bereavement follow up Bereavement follow up Support of family and professional caregivers Support of family and professional caregivers Financial support Financial support Music TherapyMusic Therapy

ParentsParents

The best and worst aspects of a family relationship will The best and worst aspects of a family relationship will be expressedbe expressed

Lifelong destructive patterns to intimate loving Lifelong destructive patterns to intimate loving characteristicscharacteristics

Important for the coping with griefImportant for the coping with grief

EmotionsEmotions

Anticipatory griefAnticipatory grief

GriefGrief ShockShock Angry sadnessAngry sadness DespairDespair

AbandonmentAbandonment

IsolationIsolation

Failure in their role as a parent and protectorFailure in their role as a parent and protector

Fear of coping with the child’s pain and deathFear of coping with the child’s pain and death

LossLoss Of themselfOf themself Of the future their child would haveOf the future their child would have

Interventions to manage Interventions to manage Palliative Care and DeathPalliative Care and Death

Address the specific parental feelings and needsAddress the specific parental feelings and needs

Affirm parents as loving and capable of making good decisionsAffirm parents as loving and capable of making good decisions

Help the family stay connected with child until deathHelp the family stay connected with child until death

Facilitate communicationFacilitate communication

Help the family develop memories they can hold and cherish long after the Help the family develop memories they can hold and cherish long after the child has died (maintain hope)child has died (maintain hope)

Help parents manage the palliative process and health care systemHelp parents manage the palliative process and health care system

Help parents talk about funeral plansHelp parents talk about funeral plans

Allow parents to make as many roles as possibleAllow parents to make as many roles as possible

Helping Parents talk to Helping Parents talk to their Child about Dyingtheir Child about Dying

Don’t underestimate what the child knows about their illnessDon’t underestimate what the child knows about their illness

Maintain open communicationMaintain open communication

Provide outlets for angerProvide outlets for anger

Follow the child’s leadFollow the child’s lead

Be honest with the childBe honest with the child

Allow the child to say goodbyeAllow the child to say goodbye

Let the child share their feelings of grief and pain when readyLet the child share their feelings of grief and pain when ready

Help the child to live during the dying process (maintaining hope)Help the child to live during the dying process (maintaining hope)

Impact of a Diagnosis Impact of a Diagnosis on a Childon a Child

““When I heard that I had leukemia, I turned pale When I heard that I had leukemia, I turned pale with shock. I was scared of needles, blood, of with shock. I was scared of needles, blood, of seeing all the doctors, of what was going to seeing all the doctors, of what was going to happen to me. I was MAD about a lot of things: happen to me. I was MAD about a lot of things: staying in the hospital, taking medicines, bone staying in the hospital, taking medicines, bone marrows, spinal taps, IVs, being awakened in the marrows, spinal taps, IVs, being awakened in the middle of the night. I was sad that I didn’t have middle of the night. I was sad that I didn’t have my toys and that I was missing out on everything. my toys and that I was missing out on everything. I felt lonely and cried about not being at home I felt lonely and cried about not being at home and not being able to go outside. I also felt hope: and not being able to go outside. I also felt hope: getting better, going home, eating food from getting better, going home, eating food from home, and seeing my friends.”home, and seeing my friends.” (8-year-old boy) (8-year-old boy)

Irreversibly Altered Irreversibly Altered RealityReality

The diagnosis stands as a dividing line (a The diagnosis stands as a dividing line (a marker of ‘before and after’ ) marker of ‘before and after’ )

Ruptures the continuity between the past, Ruptures the continuity between the past, present and futurepresent and future

Security from predictability is lost as the child Security from predictability is lost as the child is thrust into a world of uncertaintyis thrust into a world of uncertainty

Inability to take time for granted Inability to take time for granted

represents a crucial loss represents a crucial loss

during childhoodduring childhood

Stages of Learning About Stages of Learning About IllnessIllness

Realization that “it” is a serious illnessRealization that “it” is a serious illness

Understanding of the names of drugs, uses, and Understanding of the names of drugs, uses, and side effectsside effects

Knowledge of the procedures and treatments Knowledge of the procedures and treatments (relationship between symptoms and procedures)(relationship between symptoms and procedures)

Realization that the disease is a series Realization that the disease is a series

of remissions and relapsesof remissions and relapses

Understanding that the disease will cause Understanding that the disease will cause

death when the drugs are no longer effectivedeath when the drugs are no longer effective

Changes in Self-Changes in Self-ConceptConcept

Seriously ill – observation of parents Seriously ill – observation of parents after told diagnosisafter told diagnosis

Seriously ill and will get better – Seriously ill and will get better – first remissionfirst remission

Always ill and will get better – first relapseAlways ill and will get better – first relapse

Always ill and will never get better – several Always ill and will never get better – several relapses and remissionsrelapses and remissions

Dying (terminally ill) – death of a peerDying (terminally ill) – death of a peer

Perceptions of Perceptions of RecurrenceRecurrence

Punishment for misdeed or not following Punishment for misdeed or not following treatment properlytreatment properly

Loss of hopeLoss of hope Death is unavoidable and fast Death is unavoidable and fast

approachingapproaching

Establishing realistic goals and enabling Establishing realistic goals and enabling concurrent careconcurrent care

Perceptions of DeathPerceptions of Death

1-3 years: “Mommy, after I die, how long will it 1-3 years: “Mommy, after I die, how long will it be until I’m alive again?”be until I’m alive again?”

3-5 years: “I have been a bad boy, so I have to 3-5 years: “I have been a bad boy, so I have to die.”die.”

5-10 years: “How will I die? Will it hurt? Is 5-10 years: “How will I die? Will it hurt? Is dying scary?”dying scary?”

10-13 years: “I’m afraid if I die my mom will 10-13 years: “I’m afraid if I die my mom will just break down.”just break down.”

14-18 years: “This is so unfair! I just need to be 14-18 years: “This is so unfair! I just need to be alone.”alone.”

A Dying Child’s GriefA Dying Child’s Grief

““I just wish that I had armfuls of time” I just wish that I had armfuls of time” (4-year-old (4-year-old child)child)

““They all cry” They all cry” (8-year-old child’s response to being (8-year-old child’s response to being asked what changed in his family after he became ill)asked what changed in his family after he became ill)

““I’m afraid if I die my mom will just break down. I’m 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 worried that when I die. I’ll miss my family, or forget them, or something. I don’t want to tell people that them, or something. I don’t want to tell people that I’m going to die, or anything, because I don’t want to I’m going to die, or anything, because I don’t want to be treated differently” be treated differently” (13-year-old adolescent)(13-year-old adolescent)

A Dying Child’s GriefA Dying Child’s Grief

A child with a terminal illness is on a journey that A child with a terminal illness is on a journey that most others in his/her support network have not most others in his/her support network have not been onbeen on

Children look to parents to guide them through this Children look to parents to guide them through this unknown territory, a task that most parents are unknown territory, a task that most parents are not prepared (either emotionally or by experience)not prepared (either emotionally or by experience)

Terminal illness sets the child apart from other Terminal illness sets the child apart from other children, placing the child in a world that is foreign, children, placing the child in a world that is foreign, painful, and time-limitedpainful, and time-limited

Facing the end of life can therefore be a Facing the end of life can therefore be a frightening, lonely experience for a childfrightening, lonely experience for a child

Emotions of a Dying Emotions of a Dying ChildChild

Anger toward the illness and the deprivations it bringsAnger toward the illness and the deprivations it brings Anger toward the parents/caregivers for their inability Anger toward the parents/caregivers for their inability

to make the illness go awayto make the illness go away Fear of regression, loss of functioningFear of regression, loss of functioning Fear of separation, loneliness, abandonment, and Fear of separation, loneliness, abandonment, and

being forgottenbeing forgotten Fear of bodily mutilationFear of bodily mutilation Sadness over current and future lossesSadness over current and future losses Guilt for how the illness is impacting the familyGuilt for how the illness is impacting the family Shame and embarrassment over the physical changes Shame and embarrassment over the physical changes

caused by the illnesscaused by the illness Fear of the unknownFear of the unknown Fear of suffering and painFear of suffering and pain

How To Support a Dying How To Support a Dying ChildChild

Be honest – do not underestimate the child’s Be honest – do not underestimate the child’s capacity to understandcapacity to understand Remember it is okay to say “I do not know”Remember it is okay to say “I do not know” Answer only what the child wants to knowAnswer only what the child wants to know

Minimize separation from parentsMinimize separation from parents

Be emotionally available – create open Be emotionally available – create open communication but do not force itcommunication but do not force it Listen first, then offer supportListen first, then offer support Follow the child’s leadFollow the child’s lead Provide creative outlets for the child’s emotionsProvide creative outlets for the child’s emotions

Encourage quality of lifeEncourage quality of life

Maintain disciplineMaintain discipline

Sustain hopeSustain hope

Help maintain peer friendshipsHelp maintain peer friendships

Maintain familiar routines, or explain why routines must Maintain familiar routines, or explain why routines must be changedbe changed Familiar schedules or daily activities provide a sense Familiar schedules or daily activities provide a sense

of security for the child.of security for the child.

Provide privacyProvide privacy Adolescents and teens need to have their privacy Adolescents and teens need to have their privacy

respected, and their developing sexuality recognized respected, and their developing sexuality recognized and addressedand addressed

Play TherapyPlay Therapy

Physical self-expressionPhysical self-expression

Tape recorders, play telephones, Tape recorders, play telephones,

and microphonesand microphones

Stuffed animalsStuffed animals

Puppets and dollsPuppets and dolls

Art TherapyArt Therapy

Five faces techniqueFive faces technique

Feeling CollagesFeeling Collages

PhotographyPhotography

““Word” TherapyWord” Therapy

Journals, letters, and poetryJournals, letters, and poetry

Reading and storytellingReading and storytelling

Sentence completionSentence completion

Wishes and fears inventoryWishes and fears inventory

Some children…the Jimmy Green techniqueSome children…the Jimmy Green technique

Other Activities – Other Activities – Legacy BuildingLegacy Building

How would you like to be remembered? Think How would you like to be remembered? Think of me when…of me when…

Memory boxesMemory boxes

Quilt of ComfortQuilt of Comfort

GardeningGardening

Rituals (e.g. lighting a candle)Rituals (e.g. lighting a candle)

When Death Is NearWhen Death Is Near

Behavioural and Emotional ChangesBehavioural and Emotional Changes

As the child confronts impending death, he or she may As the child confronts impending death, he or she may show signs of preparation and acceptanceshow signs of preparation and acceptance Giving gifts to be rememberedGiving gifts to be remembered Letting loved ones know it is my time to go nowLetting loved ones know it is my time to go now

The child’s actions or words are often quite matter-of-fact The child’s actions or words are often quite matter-of-fact and their significance is not necessarily elaboratedand their significance is not necessarily elaborated

The endpoint of the terminal phase is often marked by a The endpoint of the terminal phase is often marked by a turning inward on the part of the child. Their cognitive and turning inward on the part of the child. Their cognitive and emotional horizons may narrow, as they conserve all their emotional horizons may narrow, as they conserve all their energy simply for physical survivalenergy simply for physical survival

A generalized irritability is not uncommonA generalized irritability is not uncommon

When Death is NearWhen Death is Near

During the final few days, the child may During the final few days, the child may experience experience visions visions of people or of people or angels, angels, and and may talk with them.may talk with them.

When death is near, caregivers may fear that When death is near, caregivers may fear that it will not be a peaceful experience. Although it will not be a peaceful experience. Although pain and symptom management should be pain and symptom management should be employed to the very end, it is helpful to employed to the very end, it is helpful to remind the family that, usually, a child will remind the family that, usually, a child will not have a final outburst of pain or period of not have a final outburst of pain or period of intense suffering.intense suffering.

Sibling RelationshipsSibling Relationships

  

The bond between siblings develops before birthThe bond between siblings develops before birth

Impact of HospitalizationImpact of Hospitalization May view parents’ constant attention as May view parents’ constant attention as

overprotectiveoverprotective Feelings of responsibilityFeelings of responsibility Especially difficult when treatment requires Especially difficult when treatment requires

restricted social contactrestricted social contact Lack of knowledge and understanding can result in Lack of knowledge and understanding can result in

negative behaviours from siblingnegative behaviours from sibling Lack of contact with parents, may be emotionally Lack of contact with parents, may be emotionally

unavailableunavailable

Sibling Presence in End-Sibling Presence in End-of-Life Careof-Life Care

For many families idea of having a sibling For many families idea of having a sibling present is overwhelmingpresent is overwhelming Important for siblings to be included; Important for siblings to be included;

greatest factor in coping with a sibling’s greatest factor in coping with a sibling’s deathdeath

When a child is in palliative care, siblings When a child is in palliative care, siblings become a priority for supportbecome a priority for supportChildren have difficulties in the anticipatory Children have difficulties in the anticipatory

side of grief workside of grief work

Resources and Resources and Activities for SiblingsActivities for Siblings

Educational photos, medical playEducational photos, medical playPlayroom activitiesPlayroom activitiesRole modeling language and behavioursRole modeling language and behavioursPreparing for sights and sounds in the ICU Preparing for sights and sounds in the ICU

or hospiceor hospiceMemory building, concrete mementos, e.g. Memory building, concrete mementos, e.g.

a stuffed animala stuffed animalMemory boxes, scrapbooks, lettersMemory boxes, scrapbooks, lettersTalking, singing, readingTalking, singing, reading

Children’s Children’s Understanding of DeathUnderstanding of Death

5 components of understanding:5 components of understanding:UniversalityUniversality IrreversibilityIrreversibilityNonfunctionalityNonfunctionalityCausalityCausalityNoncorporeal continuation Noncorporeal continuation

Tim’s Understanding of Tim’s Understanding of DeathDeath

6-9 years old6-9 years oldBegins to understand the concept in an Begins to understand the concept in an

adult wayadult wayFeels it happens to others, not within own Feels it happens to others, not within own

systemsystemMay be superstitious, fearful of deathMay be superstitious, fearful of deathMay be uncomfortable in expressing own May be uncomfortable in expressing own

feelingsfeelingsWorries that other important people may Worries that other important people may

diedie

Talking to Children Talking to Children About DeathAbout Death

Involve parents/caregivers in the decision to Involve parents/caregivers in the decision to speak to child about death of a sibling, speak to child about death of a sibling, acknowledge own grief at the outsetacknowledge own grief at the outset Avoid “conspiracy of silence”Avoid “conspiracy of silence” Accurate, factual information that is Accurate, factual information that is

developmentally appropriatedevelopmentally appropriate Clear, concise explanationsClear, concise explanations Ask children what they know of the situationAsk children what they know of the situation Explore feelings by asking “What do you Explore feelings by asking “What do you

think?”—Encourage child to answer own think?”—Encourage child to answer own questionsquestions

Avoid euphemisms and clichésAvoid euphemisms and clichés

Other ConsiderationsOther Considerations

Limit the number of people in the room, to Limit the number of people in the room, to encourage child to ask questions, express selfencourage child to ask questions, express self

Identify family members who are effective Identify family members who are effective supports, available to childsupports, available to child

Point out all the people who care and are Point out all the people who care and are available to childavailable to child

Coping With the Death Coping With the Death of a Siblingof a Sibling

3 Principles that impact coping ability:3 Principles that impact coping ability:Direct ActionDirect ActionPredictabilityPredictabilityAffiliationAffiliation

Other BehavioursOther Behaviours

PsychophysiologicalPsychophysiologicalSleeping difficultiesSleeping difficultiesChange in appetiteChange in appetite Increased anxiety, aggression, attention Increased anxiety, aggression, attention

seeking behaviourseeking behaviourDecreased concentration, socially Decreased concentration, socially

withdrawnwithdrawnHypermaturityHypermaturity

Common FeelingsCommon Feelings

Guilt, for escaping the disease or magical Guilt, for escaping the disease or magical thinkingthinking

Regret, past disagreements etcRegret, past disagreements etc

ReliefRelief

Children communicate best through play and Children communicate best through play and creative activitiescreative activities

Wolfelt’s 6 Wolfelt’s 6 Reconciliation Needs of Reconciliation Needs of

MourningMourning Acknowledge the reality of deathAcknowledge the reality of death

Move towards the pain of the loss while being Move towards the pain of the loss while being nurturednurtured

Convert the relationship with the person from one of Convert the relationship with the person from one of presence to one of memorypresence to one of memory

Develop a new self-identity based on life without the Develop a new self-identity based on life without the person who has diedperson who has died

Relate the experience of death to a context of Relate the experience of death to a context of meaningmeaning

Experience a continued supportive adult presence in Experience a continued supportive adult presence in future yearsfuture years

The Issue of IdentityThe Issue of Identity

Roles played by each sibling impact the Roles played by each sibling impact the family structurefamily structureAltered relationships between surviving Altered relationships between surviving

siblings and familysiblings and familyLoss of a playmate, confidante, rival, role Loss of a playmate, confidante, rival, role

model, friendmodel, friendLoss of “old” part of self that was attached Loss of “old” part of self that was attached

to the siblingto the siblingNew logistical roles, chores etc; confusion New logistical roles, chores etc; confusion

when a new person takes on these roleswhen a new person takes on these roles

Identity, ContinuedIdentity, Continued

Changes in Personal View of SelfChanges in Personal View of SelfAm I still a brother/sister?Am I still a brother/sister?Awareness of own mortalityAwareness of own mortalityChild may think and feel in foreign waysChild may think and feel in foreign ways

Regressive self-identityRegressive self-identity Increased dependence, helplessnessIncreased dependence, helplessnessMaking sense of this new selfMaking sense of this new self

Support for Children Support for Children After a Sibling’s DeathAfter a Sibling’s Death

Important to collaborate with teachers/child care Important to collaborate with teachers/child care professionals to update on what is going onprofessionals to update on what is going on

Support Groups for siblings and familiesSupport Groups for siblings and families Family-centeredFamily-centered Open-endedOpen-ended Child-directed activities, legacy buildingChild-directed activities, legacy building Developmentally appropriate groupingsDevelopmentally appropriate groupings

InterventionsInterventions Physical activityPhysical activity Creative outletsCreative outlets Memory building, legacy buildingMemory building, legacy building

Grandparent’s GriefGrandparent’s Grief

Loss of a grandchild involves multiple sources of Loss of a grandchild involves multiple sources of pain:pain:Loss of the grandchildLoss of the grandchildMourning for one’s own childMourning for one’s own childMourning for oneselfMourning for oneselfSurvivor guiltSurvivor guiltBeing unable to protect family from painBeing unable to protect family from painOften have already experienced multiple Often have already experienced multiple

deaths; parents, siblings, spouses, friendsdeaths; parents, siblings, spouses, friends

Themes in Themes in Grandparents’ Grandparents’ ExperiencesExperiences

A “place” for mourningA “place” for mourningAccompanying child during illnessAccompanying child during illnessParting from grandchildParting from grandchildBereaved extended familyBereaved extended familyStrained relationships with own childrenStrained relationships with own childrenReturn to livingReturn to living

The Impact of a Child’s The Impact of a Child’s Death on Hospital StaffDeath on Hospital Staff

Important to acknowledge stresses and strains Important to acknowledge stresses and strains on staff:on staff:Most common form of stress identified by Most common form of stress identified by

staff is witnessing children in physical and staff is witnessing children in physical and emotional pain and distressemotional pain and distress Lack of resourcesLack of resources Difficulties in staff communicationDifficulties in staff communication

Vicarious trauma—internalize families’ painVicarious trauma—internalize families’ painPerceive unfairness of child’s deathPerceive unfairness of child’s deathFeelings of vulnerability as a parent oneselfFeelings of vulnerability as a parent oneself

Strategies for StaffStrategies for Staff

Healthy awareness of own personal lossHealthy awareness of own personal lossDebriefingDebriefingParticipation in memorial servicesParticipation in memorial servicesSupport groupsSupport groupsEducational opportunities, in-services, Educational opportunities, in-services,

ongoing trainingongoing training

Questions? Comments?Questions? Comments?

Thank you!Thank you!