MASONIC HOMES INCORPORATED. When the journey ends

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1 MASONIC HOMES INCORPORATED When the journey ends

2 Introduction Palliative care and dementia Supporting older people in their decision to die at home How as an organisation was this possible Extended Aged Care at Home Packages (EACH) Case Study Brenda & Dennis their journey Some of the issues we faced

3 Palliative care and dementia Palliative care is the active care of patients where disease is not responsive to curative treatment the goal of palliative care is the achievement of the best possible quality of life for patients and their families. (WHO 2000) Treatment focus Palliating or relieving symptoms at end of life Providing emotional and practical support; symptom/pain/nutrition/hydration/medication management Familiar environment Flexible approach to meet individual needs Recognising the uniqueness of every individual Acting in the person s best interests

4 Key issues Clients wishes and family support Support of GP and community services Communication and sensitivity to issues related to dying and death Empowerment and training of workers to care for people who are dying at home Resources available in a timely manner to enable person to die with dignity

5 How as an organisation is this possible? Philosophy of Masonic Homes Person centered care Understanding that older people can be devalued by society Commitment to stand by clients Dedication and training of all staff Support provided by all tiers of Masonic Homes

6 Supporting older people in their decision to die at home Doesn t happen often Unique experience every time Privileged association for all concerned Client Carer/family Home Support Worker Registered Nurse Coordinator

7 Extended Aged Care at Home Packages Case managed packages of support for frail older people, otherwise would reside in high care facilities RN, allied health, home support workers Medical supplies, incontinence aids, equipment Working in partnership with family/carers/client to provide support around identified needs

8 A young Dennis and Brenda

9 Brenda & Dennis their journey Brenda on an EACH package for a total of 15 months Who was Brenda wife, mother, grandmother, primary school teacher, pianist, lover of arts, music, flowers, going out, good friend to many, pianist, adored children Commitment of husband Dennis together for 50 years Promise of Dennis to have Brenda at home until the end Alzheimer s diagnosed in 1999 whilst overseas

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11 Brenda and Dennis the journey Dennis zeal for exploring and implementing alternative medical approaches to treating Brenda Rehab at home following a fractured hip in 2005 Improvements noted

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13 Brenda & Dennis their journey A second fall in June 2006 was a different story Brenda again brought home to rehabilitate hospital staff advising that Brenda was now palliative Became evident that this was not the direction Brenda s life was taking reports from GP, RN, HSW Difficult decision for Dennis to face

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15 Issues faced as a service provider Active treatment vs palliative care? What is Masonic Homes duty of care? What would Brenda want? Is Dennis basing decisions of what is best for Brenda or on the emotion of losing his wife?

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17 Some of the issues we faced Dennis Coming to terms with the fact that Brenda was dying wanted to rehab like he did with first fall How could he involve the family (all overseas) web cam Provision of information so Dennis could make informed choices around care Provision of training for Dennis to enable him to continue his caring role (pain relief medication) Not loosing sight of Brenda still being a person with needs, desires and life Communicating with Dennis re his opinions

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19 Some of the issues we faced Collaboration GP Registered Nurse, near the end liaising with Palliative Team at RDNS kept program RN to maintain continuity Coordinator supporting and mentoring Home Support Workers Manager supporting and encouraging Coordinator Dennis being involved with all decisions around Brenda s care needs

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21 Some of the issues we faced The program Continuing to care for Brenda at home Dignity in life as well as death. Massage Music Aromatherapy Brenda s appearance clothes/makeup/hair Brenda s positioning to see her beloved roses Equipment Training of home support workers

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23 The journey was Emotional Unforgettable Dignified Beautiful

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25 References Abbey, J 2006 Palliative Care and Dementia Alzheimer s Australia Ellershaw J and Ward C 2003 Care of the dying patient: the last hours or days of life. British Medical Journal 326: Kristjanson, LJ, Toye C and Dawson S 2003 New dimensions in palliative care: a palliative approach to neurodegenerative diseases and final illnesses in older people. Medical Journal of Australia 179(6 Suppl):S41-S43 McWhinney IR, Martin J and Orr V 1995 Factors associated with location of death (home or hospital) of patients referred to a palliative care team. Canadian Medical Association Journal 152(3) Marshall M 1999 Promoting person-centred care for people with advanced dementia. Innovations in End-of-Life Care Zeigler H 2004 Changing lives, changing communities (revised ed). Wesley Mission Melbourne, Melbourne Australia.

26 Thank you for your attendance, you can contact us for any further information - kcallender@masonichomes.com.au sjohnson@masonichomes.com.au

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