SA Health Palliative Care Project

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• Dementia Australia's feedback

  by EmilieA, almost 3 years ago

  Thank you for the opportunity to provide input to the development of the Palliative Care Services Plan and Model of Care.

  Dementia is a terminal illness, with a trajectory of steady and gradual decline over a number of years. Comprehensive palliative care for people living with dementia should be available when and where it is needed, including in community or home-based care, residential aged care, hospice care, and acute care settings.

  People living with dementia, and their carers and families as appropriate, should be involved as early as possible in decision making around the delivery of palliative care. A flexible... Continue reading

  Thank you for the opportunity to provide input to the development of the Palliative Care Services Plan and Model of Care.

  Dementia is a terminal illness, with a trajectory of steady and gradual decline over a number of years. Comprehensive palliative care for people living with dementia should be available when and where it is needed, including in community or home-based care, residential aged care, hospice care, and acute care settings.

  People living with dementia, and their carers and families as appropriate, should be involved as early as possible in decision making around the delivery of palliative care. A flexible model of care needs to deliver the right care, at the right time, in the right settings, to meet the changing needs of people living with dementia, as the disease progresses. People living with dementia should be supported to die in their own home where they have identified a wish to do so, supported by family and carers.

  Health professionals and aged care staff should have access to additional training in palliative care for people with dementia, to provide appropriate care. Clinical Nurse Consultants who specialist in dementia palliative care would increase workforce capacity to meet the unique palliation needs of people living with dementia.

  The Nightingale program in South Australia is an example of a person-centred model of care provided by specialist nurses and allied health professionals for advanced dementia care, promoting choice, wellbeing and future planning and supporting people to stay at home longer.

  Dementia Australia has a range of resources available which outline key elements of a high quality, person-centred palliative care model for people living with dementia. We recommend that SA Health consult with the following resources:

  • Policy Statement: Palliative Care and Dementia (Dementia Australia and Palliative Care Australia)
  • Dying Well Improving Palliative and End of Life care for people with dementia (Dementia Australia)
  • Palliative Care (Dementia Australia)
  • https://www.dementia.org.au/support/support-in-your-region/south-australia/nightingale-program

  We would be happy to participate in any future consultation on palliative care in South Australia.

• Finding it hard to access palliative care

  by Younger with terminal illness , almost 3 years ago
  I have been really disappointed that it has been so hard to find practical help at home as a younger person with terminal cancer in my 40’s. I’ve been told by more than one professional that if I was over 65 there would be no problem finding me help. I have been told I am ineligible for pallative care because it is the chemo making me so sick, not the cancer, even though I am dangerously ill alone at home after chemo for at least a week. I have ended up needing to call ambulances and end up in ED... Continue reading

  I have been really disappointed that it has been so hard to find practical help at home as a younger person with terminal cancer in my 40’s. I’ve been told by more than one professional that if I was over 65 there would be no problem finding me help. I have been told I am ineligible for pallative care because it is the chemo making me so sick, not the cancer, even though I am dangerously ill alone at home after chemo for at least a week. I have ended up needing to call ambulances and end up in ED more than once and sometimes hospital admissions. It seems crazy to me that a younger person cannot access help at home, especially when you live alone. It has proven to be extremely elusive. Could I just say this greatly increases an advanced cancer sufferers feelings of depression, abandonment and despair. You really get the feeling some people don’t care if you are too sick at home to even function,. I’d really like to see palliative care help at all stages of a terminal illness and not differentiate between chemo side effects and the actual cancer. Overall it is cancer and the needed treatment as a result. If also shouldn’t be the case that a cancer sufferer that is under 65 cannot access desperately needed home support.

• Mum's story of getting no palliative care when she desperately needed it.

  by Susan Belperio, almost 3 years ago

  My Mum recently passed away in an aged care (in Qld). She entered aged care almost 3 years prior to her death from from complications of advanced dementia, most likely Lewy body Dementia. She was almost completely bed bound for this entire time, and had suffered from crippling, painful and deformative arthritis. She also suffered from frequent distressing visual hallucinations, and her lucidity fluctuated. Shortly after entry into care, a geriatrician visited and assessed her, and he recommended that a low dose infusion (of pain killer and mild sedative) be commenced to reduce her pain and decrease the anxiety surrounding... Continue reading

  My Mum recently passed away in an aged care (in Qld). She entered aged care almost 3 years prior to her death from from complications of advanced dementia, most likely Lewy body Dementia. She was almost completely bed bound for this entire time, and had suffered from crippling, painful and deformative arthritis. She also suffered from frequent distressing visual hallucinations, and her lucidity fluctuated. Shortly after entry into care, a geriatrician visited and assessed her, and he recommended that a low dose infusion (of pain killer and mild sedative) be commenced to reduce her pain and decrease the anxiety surrounding her hallucinations. To enter care, she had to appoint an EPOA and do an advanced directive. A brother who lived locally, managed to convince Mum that he would be the best person for this job, due to his 'devout' religious faith. When the geriatrician recommended the above treatment, our brother, (her EPOA) refused to allow this eminently reasonable treatment on the basis that he 'didn't agree with euthanasia'. Despite assurances from the specialist that what he proposed was the opposite of euthanasia, my brother refused the treatment and Mum spent the next 2.5 years with a quality of life far inferior to what could have been achieved with early and effective palliative care. As a specialist anaesthetist, I found this particularly horrifying, knowing how different and better her final time could have been. He even subjected her to CPR despite the total futility of her outlook when she finally succumbed to aspiration. The RN who was forced to perform chest compressions as Mum lay dying, was subsequently sent for counselling since most people in aged care are not considered suitable for CPR. There needs to be much better systems in place, whereby a Public Guardian can step in and override a rogue EPOA if a specialist or perhaps a consensus of specialists agree that their proposed treatment is in the patients best interest. The system should also allow for family members who agree with the specialists proposed treatment, to have a say in their loved one's management without having to lodge an application in QCAT or SACAT to have an EPOA revoked due to abuse of power. We had such an application in place, but naturally the court system is so overwhelmed that Mum died before our case was heard. There needs to be a much more robust system of palliative care education, training and early implementation in aged care homes. If I am unlucky enough to have Mum's genetics and end up in aged care with dementia, then I need to know that SA has developed a much better system for ensuring that every resident gets the kind of end of life care that they deserve.

• Dignitas here I come

  by Heather F, almost 3 years ago
  Watching my mother die of Parkinson's Disease Dementia, I want euthenasia for dementia - for euthenasia to be much more freely available. I'm heading to Dignitas if I get dementia, and I have two medical conditions both with an increased likelihood of dementia. I've also studied and got HDs in dementia care at uni, theoretically that should have made me positive about dementia - only made me more convinced that euthenasia is infinitely preferable. While the government is sacrificing healthcare for submarines, ... Until the government is prepared to spend big bucks on our atrocious public health system, the dying... Continue reading

  Watching my mother die of Parkinson's Disease Dementia, I want euthenasia for dementia - for euthenasia to be much more freely available. I'm heading to Dignitas if I get dementia, and I have two medical conditions both with an increased likelihood of dementia. I've also studied and got HDs in dementia care at uni, theoretically that should have made me positive about dementia - only made me more convinced that euthenasia is infinitely preferable. While the government is sacrificing healthcare for submarines, ... Until the government is prepared to spend big bucks on our atrocious public health system, the dying don't have a hope... From what I've seen as a medical student, too many people in the public system get inadequate care, especially if they're elderly. I'm determined to die young, because the old get intolerably poor care, and that includes palliative care.

• Mrs

  by Lorraine Rayner, almost 3 years ago
  Had in laws in care

  Had in laws in care

• The not so good death

  by Stacey Struck, almost 3 years ago
  In 2019, my 59 year old mother passed away from her third bout of cancer in her spine. She had been diagnosed with breast cancer a few years before that and then brain cancer, and finally succumbed to spinal cancer. It was honestly the most difficult thing to watch your loved one struggle along for two weeks. Thinking is she finally dead!? And then her breathing would kick back in. It has been the most emotionally and mentally scarring thing to go through. This went on for a week. We sat at my mums bedside for 31 hours straight waiting... Continue reading

  In 2019, my 59 year old mother passed away from her third bout of cancer in her spine. She had been diagnosed with breast cancer a few years before that and then brain cancer, and finally succumbed to spinal cancer. It was honestly the most difficult thing to watch your loved one struggle along for two weeks. Thinking is she finally dead!? And then her breathing would kick back in. It has been the most emotionally and mentally scarring thing to go through. This went on for a week. We sat at my mums bedside for 31 hours straight waiting for her to have a peaceful death. But unfortunately for our family it wasn’t meant to be. My mum was not wanting to be alive but had to linger for two weeks to only then pass away on her eldest grandsons 16th birthday. It was a terrible day for it to happen, my mum wouldn’t have wanted it to be like that. It has left long lasting effects on my son. He doesn’t feel he can celebrate his birthday anymore. There was no control over the final week, we knew mum was going to die? But when was the question. We were initially told we would have mum until around December and she took a sharp decline at the end of April. There were some staff that were absolutely wonderful. But one thing I didn’t like was sending unprepared student nurses in who couldn’t handle the situation. I was having to comfort a student in our families time of need. A student should be mentored properly if this is going to be their job. I was worried for her mental well-being on a placement in an unfamiliar town. We really need to do better and support people properly. The 31 hours we spent in hospital were in uncomfortable chairs, I was awake the whole entire time as there wasn’t comfortable furniture in the palliative care room. My mum had several unwitnessed falls due to switch board putting phone calls through to her room when she was not ambulating well. Little things like that you need to be aware of so you don’t have patients who are a falls risk, falling to get a phone. There was no tv, unless you paid $14 a day for free to air tv. Patients should not have to pay for free to air tv. Is abhorrent in this day and age to be charging sick people for tv they can get free in home. Things like that can impact any patients mental health. Laying in a dead quiet environment. Provisions were made for my dad which was so kind so he could stay each night with my mum. By doing this our family could be a part of my mothers care in her final days and not have to bother the nursing staff all the time. Enabling families to be a part of their loved ones care is empowering, to provide mouth care, hand and foot care, gave us something to actually do and put our minds elsewhere at the time and we felt like we were giving back to our mother, our matriarch of the family. Palliative care is never easy to witness but when it’s a family member like your mum, you cannot erase the horrible things you have seen. Or you can’t erase the terrible thoughts you may of had, to help get your loved one over the line. It is something that will stick with me forever and my whole entire family. The transition could of been nicer for us all. I wish I had also received some kind of counseling after going through that.

• The best Palliative Care

  by Judith Milford, about 3 years ago
  When my husband had a life limiting illness in 2019, the oncologist referred him to Palliative Care at FMC (Laurel House). My husband had decided to remain at home for his final days.

  A Palliative Care doctor and nurse, then a Health Navigator came to our home to arrange a care package for end of life. An Occupational Therapist came to see what was necessary and a special bed, wheel chair, shower chair and many other items were delivered.

  Help with showers was arranged as well as regular palliative care nurses and a physiotherapist. Palliative care volunteers were available to... Continue reading

  When my husband had a life limiting illness in 2019, the oncologist referred him to Palliative Care at FMC (Laurel House). My husband had decided to remain at home for his final days.

  A Palliative Care doctor and nurse, then a Health Navigator came to our home to arrange a care package for end of life. An Occupational Therapist came to see what was necessary and a special bed, wheel chair, shower chair and many other items were delivered.

  Help with showers was arranged as well as regular palliative care nurses and a physiotherapist. Palliative care volunteers were available to sit with my husband if I needed to shop or had a medical appointment. A carers Association volunteer came a couple of times to give me a break. Towards the end nurses came daily then twice daily.

  All this was at no cost to me and I will be forever grateful.

  
  

• Mr

  by Jon, about 3 years ago
  Terminal illness

  Terminal illness

• Palliative Care

  by B Schroeder, about 3 years ago
  About 15 years ago my younger sister died of cancer. She was 42.

  
  

  The last weeks of her life were spent in the hospice attached to the Daws Rd Repatriation Hospital.

  The staff were wonderful. She was cared for and looked after and respected, and they cared for her family as well (very hard on her children). She was kept as comfortable as possible the whole time and suffered very little.

  I have never forgotten how positive the whole experience was, under the circumstances, and how well her final days were managed. THAT has stuck in my mind as genuinely... Continue reading

  About 15 years ago my younger sister died of cancer. She was 42.

  
  

  The last weeks of her life were spent in the hospice attached to the Daws Rd Repatriation Hospital.

  The staff were wonderful. She was cared for and looked after and respected, and they cared for her family as well (very hard on her children). She was kept as comfortable as possible the whole time and suffered very little.

  I have never forgotten how positive the whole experience was, under the circumstances, and how well her final days were managed. THAT has stuck in my mind as genuinely 'dying with dignity'. No suicide involved. No invited killing of another person. Just care and concern and a good death (so far as any death can be good).

  
  

  I have only praise for the staff and the environment there. It is so sad that it was destroyed as part of Transforming Health. THIS is the sort of thing we need more of.

• My father slipped through the cracks of the system

  by CarolynH, about 3 years ago
  My father had end stage renal disease and had been on dialysis for ten years at Flinders Medical Centre. When he became hospitalised, the decision was made to withdraw him from treatment and so I asked his attending doctor at FMC that he be reviewed by the palliative care team to ensure that his final days were comfortable.

  The palliative care team were not notified and my father's pain was treated with intravenous morphine. I requested that he be given a syringe driver to slowly administer the morphine because the 'as needed' bolus morphine injections he was receiving were making... Continue reading

  My father had end stage renal disease and had been on dialysis for ten years at Flinders Medical Centre. When he became hospitalised, the decision was made to withdraw him from treatment and so I asked his attending doctor at FMC that he be reviewed by the palliative care team to ensure that his final days were comfortable.

  The palliative care team were not notified and my father's pain was treated with intravenous morphine. I requested that he be given a syringe driver to slowly administer the morphine because the 'as needed' bolus morphine injections he was receiving were making his symptoms swing from difficulty breathing (too much morphine) to unresolved pain (too little morphine). Syringe drivers also have a mixture of maxalon to treat morphine induced nausea, and midazolam, a muscle relaxant which enables the morphine dose to be reduced.
  My request for a syringe driver was ignored and my father died from an accidental overdose of morphine when his nurse gave him a bolus injection when he was in agony. This traumatised the nurse who administered the fatal bolus dose and was a shock to my mother and sisters who were with him and had requested that his pain be treated.
  This happened over ten years ago and remains a haunting memory of my father's death. Ironically, the simple provision of a syringe driver would have made the nurses' job easier as the drivers only need topping up once a day. I understand that palliative care teams are in demand and underfunded, but I would like to see more doctors and nurses trained to to prescribe and administer syringe drivers, thank you.