Dr. Cheryl Nekolaichuk Sheila Killoran Tertiary Palliative Care Unit Grey Nuns Community Hospital 24 th Annual Palliative Care Conference Edmonton AB- October 29, 2013 1
1. To explore the gaps and needs in psychosocial spiritual resources in palliative care 2. To provide tips and tools for patients and family support: pain & symptom management anticipatory grief & bereavement community resources 3. To share and discuss how these resources can be used in clinical practice 2
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Edmonton Zone Palliative Care Program Annual Meeting June 13, 2013 Topic: How can we enhance the psychosocialspiritual resources in the Edmonton Zone Palliative Care Program (EZPCP)? 4
Participants acknowledged the importance of this topic as an under-resourced area of need for patients, families and staff. Results summarized into four domains: resources education partnerships organizational support 5
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We know that non-pharmacological approaches can help relieve pain & anxiety and lower peoples perceptions of pain. What types of techniques can be used by caregivers and staff? What techniques can be taught to patients for their own use? 7
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Work with your patient to empower them. Identify: Personal strengths Ways they cope New coping techniques Approaches family/staff can help with Write up a list & post it in their room 9
1. Put on a CD and deeply listen to the music with your eyes closed. Music that: Gets their attention Has supportive messages Is personally significant Is from their spiritual/faith tradition Relaxation music 10
2. Deep breathing. Breath in slowly to a count of 4, breath out to a count of 6. Basic breathing techniques Contraindications: Persons with dyspnea or where drawing attention to their breathing would cause increased anxiety. Use relaxations imagining colour, a soft breeze, etc. instead. 11
3. Imagine the colour of your pain. Imagine a soothing, calming colour, changing the colour of your pain. Pick a soothing or relaxing colour Imagine the colour moving through the body in sequential order (i.e.: from head to toe) 12
4. Imagine pink love expanding from your heart and flowing through your body. Have the patient choose the colour and/or a quality (i.e.: peace, calm ) With practice, patients focus and skill improves and it becomes more effective 13
5. Colour a Mandala Mandalas are traditionally viewed as a symbolic representation of the universe in various religious and cultural traditions. A circle with repeating patterns or images drawn within. Creative outlet/ distraction SpinLights Stained Glass Colouring Book, Publisher: Mindware Ed Sibbett, Jr. Zodiac Stained Glass Colouring Book 14
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6. Put on the Amazing Grace DVD. DVD s with slide-show of photos accompanied by music. The combination of visual and auditory stimulation is effective for some patients. These could be purchased by family or by your unit to be lent out to patients. 16
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7. Read scripture & pray. The on-call-chaplain is available on weekends. Identify a prayer for relief from pain, or a prayer for comfort Family can bring in special prayers/readings to put in a binder for the patient. 18
How Can I Support My Patients & Families with Music? 19
Talk about musical memories Encourage listening to familiar music Have family bring in special music Music that supports their connection to culture / identity 20
Build a library for patients/ families Donations of music Donated monies Foundation monies CD players for rooms/ DVD players play CD s IPods -I pads Build a CD Library 21
Relaxation (sound effects, ocean, etc.) Relaxation Music Spiritual Classical Country Rock Popular Folk Blues/Jazz World Music Categories 22
Music can facilitate relaxation Thin Texture not too many voices at once Piano and violin Guitar and voice Tempo speed of the music 60-70 beats per minute Non-rhythmic music for uneven breathing Gregorian chant Silence after 45-60 minutes of music 23
Caution on using Nature Sounds. These are not recommended for persons with dementia, delirium or confusion about their surroundings. Can be disorienting or increase anxiety. Music can directly connect with emotion some people may not want to go there. See sheet handouts for more examples 24
Anticipatory Grief & Bereavement It is easier to say, My tooth is aching than to say My heart is broken. C. S. Lewis (1940). The Problem of Pain, p. 144. 25
provide a safe place to share their concerns validate and normalize their experiences offer emotional support acknowledge family caregivers unique roles & include them in decision making as appropriate offer family meetings and conferences provide information regarding resources 26
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Orientation Manual Counselling Room Brochures & Handouts Children s and Teens Books & Resources Community Resources Bereavement List Bereavement Package 28
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Involve everyone from the start. Be open and honest. Share information in ways they can understand. Keep them informed. Avoid surprises. Allow them to share their feelings. Try to maintain their usual routine. Let them know who will care for them. 31
Are you going to die? 32
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What is Palliative Care? What Do You Say to Someone Who is Dying? What To Expect As The Final Stages Of Death Approaches What is Anticipatory Grief? Free download available at: www.palliative.org 34
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Keep the patient informed. Listen to your loved one. Talk to the healthcare team. Recognize your role. Let conflicting emotions happen. Care for yourself. Get support. There is no right way to grieve. Say the important things. Olsen (2012). Managing pain in palliative patients. LEAP Magazine. 36
How to Work through Grief Grief in the Family Child Bereavement How to Support a Teenager Who is Grieving Free download available at: www.palliative.org 37
Every member of a family grieves differently Intuitive Grievers Openly express feelings More sensitive and tend to internalize grief Counseling, support groups are helpful Instrumental Grievers Experience grief by thinking, reflecting or being active Logical, factual, problem solvers May appear cold or withdrawn Find comfort through self-help books or physical activities 38
Covenant Health/AHS Bereavement Services in Greater Edmonton Information to help you at the time of your loved one s death Edmonton & Area Funeral Homes Information the funeral home will need Are you working through the layers of grief? Bereavement resource bookmark Alberta Funeral Services Association Funerals: An information guide Grieving: Our Time Yours, mine and our children s grief: A parent s guide Society for the Retired and Semi-Retired What to do when someone dies 39
Bereavement Services The Support Network City of Edmonton Community Support Services Pilgrims Hospice Employee Assistance Programs Family Physicians Friends & family networks 40
Spiritual Resources (spiritual leaders, parish nurses) Psychology Services Community social workers Home Care Primary Care Networks Mental Health Resources (see 211 list) Alberta Cancer Line (1-888-432-8865) Psychosocial Spiritual Resources, CCI 41
Canadian Virtual Hospice www.virtualhospice.ca Supporting a person who needs palliative care: a guide for family and friends (Palliative Care Victoria, 2004. Available at: www.centreforpallcare.org Park Memorial Handouts Helping Yourself Heal; Children s Grief; etc. www.parkmemorial.com Allen Wolfelt www.centerforloss.com 42
211 Support Lists www.211edmonton.com Edmonton Zone Palliative Care Program www.palliative.org Changes Toolkit www.changestoolkit.ca Canadian Virtual Hospice www.virtualhospice.ca Inform Alberta www.informalberta.ca 43
What tips do you have for dealing with psychosocial spiritual issues in your clinical practice? What types of psychosocial spiritual resources do you have available? What additional resources do you need? 44
What are you learning about how to deal with psychosocial spiritual issues? How can you apply this in your practice? If you could pick one idea from today to enhance your practice, then what would it be? 45