inpatient palliative care family caregiver group education session part of st vincent’s hospital...
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Inpatient Palliative Care Family Caregiver
Group Education Session
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
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The main goal of the session
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
The main goal of this education session is to provide you with strategies and resources that will allow you to best support your family member and take better care of yourself.
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The guidelines for our group
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Limitations of a ‘one-off’ education session• Not a counselling session• Respect each other’s unique experience and values• Privacy is also respected – no obligation to share• Confidentiality is observed• Feel free to take ‘time out’ if you are feeling upset• Questions are invited at the end of each topic (or later in
a suitable setting)
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Introductions
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Please briefly introduce yourself to the group
• E.g. first name, relationship of the person you are caring for and what you like to do in your spare time (when you have some)
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Overview of the session
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
To inform primary family carers about:
1. What is palliative care? 2. The typical role of a family carer3. Support services available4. Preparing for the future5. Self-care strategies for optimal wellbeing
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Getting started
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
Describe your biggest current challenge or concern related to your caring role
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The Carer Kit
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Palliative care service brochures• A guidebook• A copy of today’s presentation• A relaxation CD (Commonwealth DoHA)• Fact sheets on ‘reducing stress’ and ‘sleeping well’
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Topic One – What is palliative care?
Objective:
To inform family carers about palliative care
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Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
What is palliative care?
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Aims to help people with a life-threatening illness• Family-centred support• Symptom management• End of life care• Psychological, social and spiritual care• Bereavement support
Refer to page 9 of the guidebook
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Topic Two – The typical role of a family carer
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
Objective:
To explore the typical role of a family carer when a family member is an in-patient receiving palliative care
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Who is a carer?
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
Someone giving support to a person who is unwell …
Carers can be a …•Relative•Spouse•Friend
Refer to page 7 of the guidebook
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What do carers do?
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Emotional care – listening and being there• Practical care – meals, medications, bathing,
transporting to medical appointments• It depends on what you feel comfortable doing• If you are unsure, ask a nurse
Refer to page 9 of the guidebook
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Typical reactions when a relative requires palliative care
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Can I do this? And for how long?• What skills do I need?• Who can help me?• What can I expect?• What resources are available?
Refer to page 7 of the guidebook
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My options as a carer
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Access information to assist in care• Seek financial help• Say ‘no’ to things you are uncomfortable with• Access additional support: e.g. house cleaning, meals
on wheels, interpreter services, extra nursing input etc.• Seek further opinions
Refer to page 12 of the guidebook
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Topic Three – Support services available
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
Objective:
To inform family carers on the services available within the in-patient unit and the support services and resources available within the community.
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Support services available
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Services available within the inpatient palliative care unit
• Services and resources within the community
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Resources available
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• GP• Palliative Care Australia www.pallcare.org.au • Support groups• Local council• Carers Resource Centre 1800 242 636• Carer Respite Centres 1800 059 059
Refer to pages 9-12 of the guidebook
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Other services
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Health professionals (dietician, naturopath etc.)• Alternative and complementary therapies• Private nursing agencies • Private food services
Refer to page 27 of the guidebook
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Legal matters and other practical thingsto consider
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Preparing a will• Power of Attorney• Advanced care decisions• Funeral arrangements• Financial matters• Carer payment
Refer to pages 32-33 of the guidebook
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Topic Four – Preparing for the future
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
Objective:
To inform family carers about:
1. potential future site-of-care options and 2. what to expect when a person is approaching death
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Tom and Mary
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
Tom is 69 and has lung cancer. All active treatment has stopped and Tom is receiving palliative care at the local palliative care unit. He is sleeping a lot and his appetite has decreased. The staff say he is declining and may only have a week or two to live. Tom wants to go home.
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Tom and Mary
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
Mary is 65 and is Tom’s wife of 42 years. They have two children together and three grandchildren. Mary has been involved in caring for Tom for over a year. It is hard work and she is tired. Now, Tom requires more care from her than when he went in to hospital (to have his pain medication reviewed). She is concerned about him coming home.
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Tom and Mary
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• What do you think Mary’s concerns are about Tom coming home?
• What might Tom’s concerns be about staying in the hospital?
• What might be some possible compromises or solutions?
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Potential options
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Explore additional options for home care and resources available
• Family meeting to explore and obtain information• Explore alternatives to care at home: inpatient palliative
care unit, hospital, residential aged care facilities
Refer to pages 29-32 of the guidebook
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Typical signs when death seems near
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Large portions of time in bed• Unable to move from bed or chair without help• Difficulty swallowing solid food• Not talking much• Occasional confusion• Restlessness• Changes in breathing
Refer to p. 47 of the guidebook
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When death occurs – recognising death
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
If in hospital:•let a health professional know
If at home:•‘there is no rush’ to do everything•Inform close relatives•Call the palliative care service and they can assist you in taking the next steps•Doctor/GP needs to be contacted to arrange death certificate
Refer to pages 52-53 of the guidebook
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How might I feel after the death
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
You may feel:
•Sadness•Distress•Shock•Anger•Resentment•Physical symptoms ie. shaking, trembling, hot/cold or both, calmness, palpitations, fatigue, hear noises or have vivid dreams
Refer to pp.53-54 of the guidebook
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• Relief• Guilt• Disorientation• Pre-occupation
• Yearning• Fear• Anxiety• Numbness
Bereavement support
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Everyone experiences grief differently• It’s okay to seek support at any time• Contact the bereavement counselling service or
your GP for support
Refer to page 54 of the guidebook
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Topic Five – Self-care strategies to promote optimal wellbeing
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
Objective:
To inform family carers of the impact of being a carer and to discuss strategies for how family carers can look after themselves at this time
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Impact on you
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Being a carer can be challenging• Some carers feel as though they get little time for
themselves and may get quite tired• Some carers feel overwhelmed• It can be physically and emotionally draining• The demands of caring can cause stress
Refer to pages 15-16 of the guidebook
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The positive aspects of caring
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
Remind yourself …•Your support is helping your relative•There are people to help you•You are doing the best you can•You can arrange to do something that makes you feel good
Refer to page 16 of the guidebook
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Caring for yourself
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Get some exercise• Get enough sleep• Maintain a healthy diet• Do something for yourself every day• Accept help• Juggling needs for you and for your relative
Refer to pages 35-38 of the guidebook
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Caring for your relationships
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Keep communication open and honest• Humour … look for the funny side of things where
possible• Work at things together• Consider showing the book “Supporting a person who
needs palliative care” to your relative
Refer to pages 38-40 of the guidebook
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Time to relax!
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
• Plan to do something enjoyable• Talk to someone you feel comfortable with• Look for the positives• Take a break from the caring role• Perform relaxation exercise
Refer to pages 40-42 of the guidebook
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And lastly …
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
The palliative care team’s aim is to support you
Questions?
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Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
Phone +61 3 9416 0000
Fax +61 3 9416 3919
Email [email protected]
Web www.centreforpallcare.org
PO Box 2900, Fitzroy VIC 3065 Australia
6 Gertrude Street, Fitzroy VIC 3065 AustraliaFunding for this project was provided by the NHMRC Palliative Care Research Grants Round 3, No. 447713.
Contact details
Part of St Vincent’s Hospital and a Collaborative Centre of The University of Melbourne, Australia
Phone
Web
Address line 1
Address line 2
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Funding for this project was provided by the NHMRC Palliative Care Research Grants Round 3, No. 447713.
Contact details