SA Health Palliative Care Project

Share your story

• Multiple experiences

  by Lyn Flaherty, over 3 years ago
  In 2019/20 I supported my mother through the Central Northern Adelaide Renal and Transplantation Service' supportive care service to reduce the symptoms of chronic kidney disease whilst providing palliative care at home through the Calvary Palliative Home Care Service. While the CNARTS focus was on my mother's care the service did not consider the ongoing impact on my father, who was her primary carer, and link him to services to support his needs. Unfortunately my mother passed just as COVID-19 hit which meant that my father, and our family, were not able to access grief and bereavement support which led... Continue reading

  In 2019/20 I supported my mother through the Central Northern Adelaide Renal and Transplantation Service' supportive care service to reduce the symptoms of chronic kidney disease whilst providing palliative care at home through the Calvary Palliative Home Care Service. While the CNARTS focus was on my mother's care the service did not consider the ongoing impact on my father, who was her primary carer, and link him to services to support his needs. Unfortunately my mother passed just as COVID-19 hit which meant that my father, and our family, were not able to access grief and bereavement support which led to increased social isolation. The palliative approach needs to consider the social needs of carers and family members throughout the journey and link them to appropriate supports. This work could be undertaken by a trained palliative care social worker.

  
  

  I've also witnessed both my in-laws experiences of palliative care in residential aged care facilities in 2014 and 2018. There needs to be a consistency approach to palliative care in aged-care facilities that is of the same standard as our health care system. I've witnessed both my in-laws pass in pain waiting long periods of time to receive medication and access to medical professionals that are authorised to administer it. This inability to provide high standards of palliative care in non hospital settings places additional pressure on our health care system. I don't think the proposed strategic framework adequately addresses this.

• Support in palliative care

  by Justeen Fisher, almost 4 years ago
  I was heavily involved in the palliative care of my Mum who has since passed away. Because she was stable during her time in hospital she had to move out to release the bed. There wasn't enough care options available for her to live with comfortably with me and instead had to go to a nursing home. There was limited pastoral care offered in hospital and no pastoral at all in the nursing home. Her mental health suffered as a result. There also needs to be more active pastoral care for families. I didn't feel comfortable seeking out anyone for... Continue reading

  I was heavily involved in the palliative care of my Mum who has since passed away. Because she was stable during her time in hospital she had to move out to release the bed. There wasn't enough care options available for her to live with comfortably with me and instead had to go to a nursing home. There was limited pastoral care offered in hospital and no pastoral at all in the nursing home. Her mental health suffered as a result. There also needs to be more active pastoral care for families. I didn't feel comfortable seeking out anyone for help for myself but would have felt differently if approached.. Not all nurses in palliative care are suited to the level of care that is required particularly in a nursing home setting.

• Mental Health & Palliative Care

  by Debbie Hage, almost 4 years ago

  I was hands on with my Father through his palliative care time and believe that there should be a Mental Health Ward in each Hospital in the Regional area. People who are at an age where the body is breaking down need help with their Mental Health and there are far too many nurses helping them that just dont understand Mental Health, also some Doctors. I am about to enter that phase with my Mum now at the age of 90. Mum struggles with extreme anxiety and the start of Dementia. We recently had to hospitalize her for this but... Continue reading

  I was hands on with my Father through his palliative care time and believe that there should be a Mental Health Ward in each Hospital in the Regional area. People who are at an age where the body is breaking down need help with their Mental Health and there are far too many nurses helping them that just dont understand Mental Health, also some Doctors. I am about to enter that phase with my Mum now at the age of 90. Mum struggles with extreme anxiety and the start of Dementia. We recently had to hospitalize her for this but the Hospital in our area , Clare SA, though a great Hospital, needs to have a Mental Health Ward which is serviced by both Doctors & Nurses who understand Mental Health. Too often she was told "there's nothing really wrong with you, get over it" Not the fault of the staff really but a system that does not provide Mental Health Wards for these people. Before you put this down to economics, These Humans paid tax all their lives and deserve bertter!

• Knowing where and what the support is

  by Penny Gale, almost 4 years ago
  One of my closest friends died earlier this year. She was the first of my friends to die. 3 months later a second friend passed. I did not know where to go for support. Being a friend rather than family diminishes your ability to get involved, you don’t have any rights as the family’s grief is viewed as more important. Greater promotion of ways to cope and grief in mainstream media would be a positive step.

  
  

  
  

  
  

  One of my closest friends died earlier this year. She was the first of my friends to die. 3 months later a second friend passed. I did not know where to go for support. Being a friend rather than family diminishes your ability to get involved, you don’t have any rights as the family’s grief is viewed as more important. Greater promotion of ways to cope and grief in mainstream media would be a positive step.

  
  

  
  

  
  

• End-of-life Doula care.

  by KI doula, almost 4 years ago

  I'm an end-of-life doula on Kangaroo Island. Living on an island presents paradoxes - we love the isolation from the mainland, but we get frustrated by being isolated from the mainland. We need to accept well-meaning FIFO services that usually have a high staff turnover. We get stuck in the turnstile of having to start our story from the beginning, again, as yet a new face sits poised to take down notes. We appreciate that services are trying their best but despair at the lack of deep understanding of the local context and community.

  The 2019/2020 fires showed the community... Continue reading

  I'm an end-of-life doula on Kangaroo Island. Living on an island presents paradoxes - we love the isolation from the mainland, but we get frustrated by being isolated from the mainland. We need to accept well-meaning FIFO services that usually have a high staff turnover. We get stuck in the turnstile of having to start our story from the beginning, again, as yet a new face sits poised to take down notes. We appreciate that services are trying their best but despair at the lack of deep understanding of the local context and community.

  The 2019/2020 fires showed the community the depths of its resilience, resourcefulness, and creativity in facing problems head-on and supporting each other through the challenging times that followed.

  Our health service, like all health services around the country, is stretched and overwhelmed. Staffing is a challenge - GPs and nurses willing to make a life here are few and far between. There isn't enough housing, and the isolation doesn't suit everyone.

  So establishing KI Doula Services just became a 'no brainer' really. A local service that rallies local resources needed from the community, to empower the community to look after its own. It isn't rocket science. It's simply about stepping back in time and doing what was done historically when we didn't outsource dying and death to facilities, and we understood that health was more than just medicine.

  Working as an EOL doula is immensely diverse, and gives me the privilege of getting to the heart of what matters to people. I have walked around privately owned properties with those wanting to know whether it might be possible to be buried on their own land when they die (it is). The conversation evolves naturally and opens into what they would like to happen as the end of life nears.

  I have provided a 'cooling unit' to families who had a person die at home, and wanted to keep them there until they were ready to let them go. I gently guide them to care for their person, to wash them and dress them, so they can hold vigil until they decide, usually two or three days later, to gently release them into the care of a funeral director.

  I have witnessed a casket painted by grandchildren about to lose their beloved grandfather, complete with envelopes of 'punkin seeds' and fishing hooks and love letters so he would have something to do 'in heaven'. I have danced with a woman after her hair fell out from chemo, and who wanted to reclaim some sense of control of her life. I've sat with many people as they navigate and craft Advance Care Directives, presented to numerous community groups about end-of-life options, been a companion, a sounding board, a shoulder, a re-arranger of rooms, or an organiser - whatever is needed so that a household can continue to function and at the same time embrace the reality that someone in that household is facing death. My support frees them up to do the thing they specialise in - loving and just 'being' with that person.

  As I type I am coordinating support for a relatively young man with early onset dementia. No family. He lives in poverty. His small band of supporters are extraordinary in doing what they can. They want to care for him until the very end. They don't want him to die alone and afraid, even if he no longer recognises them. My role is to gently guide and empower them - not barrell in and fix - but be there for the long haul, walking beside them so they can give him this amazing gift of love.

  I've written more than I ever intended, to try and capture the kind of non-medical role that an end-of-life doula can play in the life of a person facing end-of-life. I've only scratched the surface. The job takes whatever shape the client gives it.

  I think trained and experienced End-of-Life doulas can have a significant role to play as part of a pall care team around a person, and I would like to see the role become more 'mainstream' and not just accessed by those courageous enough to think outside the square. The Kangaroo Island health service is indeed taking those first steps in accepting the role, which can be funded through the NDIS 'My Aged Care' package but there is still a long way to go. Young people die too, as do those that are ostracised for any number of reasons.

  A structured approach to incorporating EOL doulas into palliative care can ease the pressure on the health system, and provide highly personalised and individualised support so that end-of-life wishes might come to fruition for more people.

  Thankyou.