SA Health Palliative Care Project

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• Let down at the most crucial time

  by Unhappy Brenda, about 3 years ago

  My name is Brenda. I worked in the aged care industry for over 20 years.

  During those years I was involved with palliative care both at work and at home. My Mother had dementia and an acquired brain injury and we, her family, had to put her into care. The last 3 years of her live was terrible. Palliative care in her nursing home was not up to standard. Fortunately, we did have the support of a palliative care in our area so at least her pain levels were addressed.

  Then a few years after that, my husband was dying... Continue reading

  My name is Brenda. I worked in the aged care industry for over 20 years.

  During those years I was involved with palliative care both at work and at home. My Mother had dementia and an acquired brain injury and we, her family, had to put her into care. The last 3 years of her live was terrible. Palliative care in her nursing home was not up to standard. Fortunately, we did have the support of a palliative care in our area so at least her pain levels were addressed.

  Then a few years after that, my husband was dying. Once again, the situation was terrible. The last 6 days of his life the poor man was in pain because of the policy of the nursing home. The nursing staff refused to allow the same palliative care team to review him, even though he was already a client of theirs. His regular doctor refused to treat him in the nursing home, so another doctor took him on. But in such a short time, he was not able to help much. Besides, the nursing staff refused to administer the DDA's ordered by the doctor.

  Because I worked in the industry I knew that more could have been done for both my Mum and my husband, but I was made to feel as though I was out of line when asking for more assistance.

  I virtually lived in both of these nursing homes for the las week of both my Mum and my Husband's lives to help where needed.

  I was always respectful to the staff in the nursing homes, and I know they worked hard at their jobs, but more training in this area would have been so helpful.

  
  

• Pure Horror

  by Graham77, over 3 years ago

  My wife died 31/01/2018 of breast cancer. Her terminal stages had taken 5 years after about 22 yrs 'remission'.

  In her final stage she took 12 weeks to die - 'too slowly' to be permitted to remain in the Modbury hospital palliative care ward (hospice) therefore we spent her last 7 weeks in the nearby nursing home within our retirement village.

  I say 'we' because of necessity I spent over 12 hours per day with her doing everything for her - toileting, chasing food, feeding, chasing pain medication (when her pump was running out).

  Her GP visited most evenings -... Continue reading

  My wife died 31/01/2018 of breast cancer. Her terminal stages had taken 5 years after about 22 yrs 'remission'.

  In her final stage she took 12 weeks to die - 'too slowly' to be permitted to remain in the Modbury hospital palliative care ward (hospice) therefore we spent her last 7 weeks in the nearby nursing home within our retirement village.

  I say 'we' because of necessity I spent over 12 hours per day with her doing everything for her - toileting, chasing food, feeding, chasing pain medication (when her pump was running out).

  Her GP visited most evenings - our minister most weeks.

  The nursing home was short of staff - they got her up in the morning, washed and dressed her & from then it was up to me. They did try to send me home!

  Fortunately I am tall & was able to lift her myself. Two staff would have been necessary and were just not available.

  The staff had little knowledge of palliative care & took no responsibility for her.

  I had the community palliative care team visit her when she started there but they didn't offer any help so I didn't call them to her again till her final days. This time she was given her final medications and mercifully died a day or two later.

  I did learn a few things which would help if my new wife was placed in this position. However I may not by then be physically strong enough to repeat my caring role.

  If I am the patient my wife will be unable to care for me in that way.

  This experience, as well as being quite cruel on my wife, has left me severely psychologically and emotionally scarred - quite unavoidably (and I have a psych degree myself).

  I hope to die quickly when my time comes.

  Don't we all?

  
  

  
  

  
  

• not all broken legs are the same

  by Trish, over 3 years ago

  My mother’s death

  I cared for my mother at home from when she was showing clear signs of dementia in 2010 until she died, in 2020.

  My mother’s death was precipitated by a fall which broke her thigh, requiring a plate to hold the bone together that extended from her knee to her hip. She was transferred to Calvary Hospital in Wakefield St for surgery, and admitted to Calvary’s orthopaedic ward to recover. She was 96 years old, had advanced dementia, and I was requesting that she receive palliative care. Nevertheless, the physiotherapist visited my mother in the morning following... Continue reading

  My mother’s death

  I cared for my mother at home from when she was showing clear signs of dementia in 2010 until she died, in 2020.

  My mother’s death was precipitated by a fall which broke her thigh, requiring a plate to hold the bone together that extended from her knee to her hip. She was transferred to Calvary Hospital in Wakefield St for surgery, and admitted to Calvary’s orthopaedic ward to recover. She was 96 years old, had advanced dementia, and I was requesting that she receive palliative care. Nevertheless, the physiotherapist visited my mother in the morning following the surgery, while I was downstairs getting a coffee. When I returned to the ward my mother was sitting in a chair, cold and in agony. The nurses found a lifter to assist her back into bed. This was the beginning of two weeks of torture, where every two hours, when she needed to be turned to prevent bed sores, she would beg the nurses to stop, often screaming and clawing at them in agony. The doctor did prescribe stronger pain relief, but it was never enough. I was in the hospital all day every day to make sure that she was given the prescribed medication before she was moved. I believe that the staff attributed her behaviour when they were moving her, to dementia rather than intolerable pain. The prescribing viewpoint was that she would soon be discharged, so her pain medication had to be taken orally rather than using injections. The hospital refused to refer her for a palliative care assessment.

  After her first week on the orthopaedic ward, Palliative Care SA gave me a name and phone number so I could directly contact Calvary’s Palliative Care Service. Their nurse came to assess my mother, and even though he thought she would benefit from palliative care, she did not fit the criteria for admission to the hospice. I rung him again a week later, when, in addition to the unbearable pain my mother was still suffering every two hours when she was turned, she was in agony from a bowel obstruction. I was told that Mary Potter Hospice would admit her if the treating doctor agreed to the transfer, which he readily did, and an ambulance was immediately dispatched.

  By this stage both my mother and I were traumatised by her suffering. The transfer to Mary Potter felt like entering another universe. Immediately her pain was taken seriously, and I was welcomed into the space as part of the patient unit. The other valuable difference was that the nurses assigned to my mother’s care were reallocated to her when they came on shift again, so we had a care team who were building relationships with us. This gentle, respectful care extended right through until my mother’s body was taken to the mortuary five days later.

  Some Learning

  When my mother was diagnosed with Alzheimer’s type dementia in 2011, I contacted the Alzheimer’s Association (now Dementia Australia), and they invited my husband, my mother and myself to participate in a six-week ‘introduction to dementia’ course. I still feel grateful for this very helpful orientation to the journey we found ourselves on, not least because it put us into a group with other people in a similar position. This could be a useful model for people who receive a life-limiting diagnosis and their families, perhaps provided by Palliative Services.

  One of the issues that leads to poorer outcomes seems to be that the moment when someone is deemed to be palliative is too late. I still do not understand why it took two weeks for a 96-year-old woman, with advanced dementia and a major injury to be transferred to the hospice. Even if my mother had recovered and returned home from the hospice, that would not have indicated a system failure, rather, an unexpected outcome. The fact that she died when she did was not a tragedy. She was near the end of her natural term, having lived a long and good life, the final ten years with a life-limiting condition. Forcing her to suffer because the standard approach when someone breaks their leg is to get them on their feet and discharged as soon as possible, was both a tragedy and a failure of the system.

• Sent home and told to die of starvation

  by The Mc Dad, over 3 years ago

  I was with my lovely wife for 20 years. We were 16 years old when we met a party in Prospect. Like all couples we had our ups and downs. Cancer had already taken enough from our family but the day we were told that my wife's small intestine had stopped working and that treatment was no longer an option. There's no solution or option. I can't imagine what was going through my wife's head. Inside I was turning all sorts of ways I couldn't say or do anything. Rachel was so strong, It's such a cruel disease not being... Continue reading

  I was with my lovely wife for 20 years. We were 16 years old when we met a party in Prospect. Like all couples we had our ups and downs. Cancer had already taken enough from our family but the day we were told that my wife's small intestine had stopped working and that treatment was no longer an option. There's no solution or option. I can't imagine what was going through my wife's head. Inside I was turning all sorts of ways I couldn't say or do anything. Rachel was so strong, It's such a cruel disease not being able to eat at all for about a month all up. I would see her chewing food and spitting it out just to get the flavour. In the time Rach had left somehow she wrote her own eulogy, birthday cards for our 4 year old boys and a letter to me. The RDNS home care nurses were amazing and when my wife was ready to go to paletive care at the Modbury hospice they were an amazing team too. I guess in a situation like this the trauma and toll it took on myself and our family is still having an affect and I think it always will. I don't think I'll ever get over it it just gets easier to deal with. I lost faith in everything I couldn't understand that it was okay to let someone die like this when we wouldn't let an animal die like that. I'm so glad that euthanasia is now getting closer to becoming legal under strict rules which is fair enough. I don't think anyone can be prepared for what we went through. To be honest I can't remember what services were offered afterwards I went downhill fast and I was in autopilot mode. There's no right or wrong way of dealing with something like this and if people are trying to help it can only be a good thing. I wasn't ready to be Widow at 36 but I get to see my boys everyday and I'm slowly getting better. My wife Rachel doesn't get to.
  

• My story as a family member and Palliative volunteer

  by Suejacquier, over 3 years ago
  My experience comes from both as a Palliative Volunteer of 25 years And as a carer to both my parents and brother , with whom I sat with while they died.

  In the case of my brother (who passed in 2010) in the Barossa, I can only say, it was my fellow volunteers that got me through..NOT the Palliative care service. Any service in this space that only provided that service during the hours of 9-5, is appalling. I understand that there are not enough staff to cover all bases, all hours....but why not? Dying is'nt scheduled to those hours... Continue reading

  My experience comes from both as a Palliative Volunteer of 25 years And as a carer to both my parents and brother , with whom I sat with while they died.

  In the case of my brother (who passed in 2010) in the Barossa, I can only say, it was my fellow volunteers that got me through..NOT the Palliative care service. Any service in this space that only provided that service during the hours of 9-5, is appalling. I understand that there are not enough staff to cover all bases, all hours....but why not? Dying is'nt scheduled to those hours. He was sent home from the Queen Eluzabeth with a brown paper bag full of lethal drugs...was this a ' do what you will' suggestion?

  In my father's case (2018), he was Discharged to a nursing home 2 weeks before he died, all while the hospital knowing he was 'imminent '. At the hospital, he had 24 hrs care with people he knew and trusted...but the hospital ( Gawler) were determined to park him in an aged care facility. Because the care (Eldercare), were so appalling in their care ( inflatable bed unplugged..he spent the night on a metal base, food out of his reach and noise levels through the roof) I stayed with him 14 hrs per day until he passed. No Palliative care, no acknowledgement of such and his doctor visited him 3 days before he died. Eldercare focused solely on getting him registered as a permanent...no acknowledgement of his Palliative state.

  What could and Should have been a sad but supported journey, turned into a Nightmare. SO...

  
  

  We need more volunteers in this field, supported by professionals.

  Hospitals need to Stop farming out patients to nursing homes who have NO interest or intention of providing adequate care!

  Palliative care services need to be 24 hours...dying doesn't stop at 5pm. In fact, most of my clients died in the early morning.

  Please end this fiasco of a talk-fest and actually listen to the 'troops on the battle front ' !

  
  

  
  

  
  

  
  

• Lisbeth

  by Lisbeth Cock, over 3 years ago
  My daughter has cancer .. terminal .. how much longer ? I hope they are wrong, the latest update says before Christmas 2022. Is there help for her to die at home? She does not want to spend her last hours in a hospice.

  My daughter has cancer .. terminal .. how much longer ? I hope they are wrong, the latest update says before Christmas 2022. Is there help for her to die at home? She does not want to spend her last hours in a hospice.

• No quality of life is no way to be at end of life...

  by Brigitta, over 3 years ago

  The story of my sister’s cancer journey is long, but these are some situations from her experience that highlight how desperate SA is for a new model of Palliative Care.

  Complete lack of mental health support, even prior to Covid. My sister has increasingly been exhibiting psychological distress, but medical and allied health staff do not ask if she is ok or inquire about her mental health. No counselling or grief support offered at any time in 3 years, despite advanced cancer diagnosis in 2019.

  Oncologist has extremely bad communication and is very uncomfortable discussing death and dying. Oncologist is... Continue reading

  The story of my sister’s cancer journey is long, but these are some situations from her experience that highlight how desperate SA is for a new model of Palliative Care.

  Complete lack of mental health support, even prior to Covid. My sister has increasingly been exhibiting psychological distress, but medical and allied health staff do not ask if she is ok or inquire about her mental health. No counselling or grief support offered at any time in 3 years, despite advanced cancer diagnosis in 2019.

  Oncologist has extremely bad communication and is very uncomfortable discussing death and dying. Oncologist is quite vague, inconsistent in his messaging and does not like direct questions from my sister or myself. Consequently, my sister has a low level of trust in him and his opinions. Oncology nurse is supportive but defers to the doctor always, and this role has been subject to changing personal and lack of replacement when staff leave occurs, meaning nurse is not always available.

  Poor communication between departments and doctors within the RAH. Different doctors provide different communication about scans and interpret them differently, so that my sister feels that the treatment being given is not appropriate, but has no recourse when she communicates her concerns.

  Oncology department and other staff treating my sister at the RAH have never discussed a referral to Palliative Care, despite an advanced cancer diagnosis in 2019. She only knew that she was eligible for Palliative Care because of my clarification of what Palliative Care actually is, and self-referred herself in 2021. The Palliative Care service is in a different local area health network than her Oncologist, and it does not seem like there is much communication or collaboration between the two different health networks.

  The Palliative Care service has a lot of staff that are friendly and at times, reassuring. However, there have been too many instances when medical and allied health staff have not followed up with what they said that they would do and have not even been in touch to explain the lack of follow up. My sister has had to wait more than a month for some actions and is constantly having to contact Palliative Care and chase things up. There have been some instances when the wrong information has been given, or there have been gaps in information. There does not seem to be a case manager or a model of care or anyone providing leadership to ensure that individuals are getting the services that they require in a timely and cohesive manner.

  Palliative Care seem to favour my sister’s GP to prescribe pain medication. However, there are barriers to my sister accessing her GP and there was recently an issue with authority not being given to the GP. In the meantime, my sister’s pain has increased a lot and she is requiring stronger medication, larger doses and greater input from Palliative Care. It seems like common sense for them to take this service on, but they don’t. This week due to a prescriber error, she had to make 8 phone calls over two days between GP, Palliative Care and pharmacies, then wait over 30 minutes in the pharmacy in a lot of pain, just so that she could get her medication.

  My sister said to me a few days ago, and I agree with her, that it feels like all of the Palliative Care staff and Oncology staff have never personally known anyone who is dying or having treatment for cancer or experiencing chronic pain or experiencing mental health issues (and certainly not all four together). Because if they did, they would be more understanding of how she is feeling and how difficult it is to just get through a day - how difficult it can be to just have a shower, or prepare for leaving the house, or attend an appointment, or prepare a nourishing meal. She has said a few times how nice the Palliative Care staff are when they deal with her (except for a really unfriendly not nice receptionist or nurse on the phone the other day), however, there seems to be a lack of empathy, perhaps because there is no lived experience, and perhaps because, like the Oncology staff, they don’t quite know how to support people experiencing psychological distress and talking about death, dying and related matters.

  “Palliative care is… focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.” Ironically, my sisters experience, especially in recent months goes against this very definition of Palliative Care. It is so sad that this is the reality of my sister’s end of life.

  Quote from: https://getpalliativecare.org/whatis/

  
  

• Home away from Home

  by Virginia Summers, over 3 years ago
  My aunty was a fierily independant elderly lady with cerebral palsy, she resisted being admitted anywhere. However she knew when it was time to go. So Aunty Shirley was admitted to Daws House Hostel...... in my opinion this is what palliative care should be like. Firstly ample car parking out the front, so drop in for 10 mins or stay the day (no carpark, no long walks, do fees), next, it was like a home, so she left her home, for another home, she was not in a cold clinical no character room. This is what for me palliative care... Continue reading

  My aunty was a fierily independant elderly lady with cerebral palsy, she resisted being admitted anywhere. However she knew when it was time to go. So Aunty Shirley was admitted to Daws House Hostel...... in my opinion this is what palliative care should be like. Firstly ample car parking out the front, so drop in for 10 mins or stay the day (no carpark, no long walks, do fees), next, it was like a home, so she left her home, for another home, she was not in a cold clinical no character room. This is what for me palliative care should look like, a home away from home.

• It could have been better and meant much more.

  by John Arthur, over 3 years ago
  My late wife suffered a dibilitating illness over a 2-3 year period. In the last 12 months of her life we received some help via Palliative Care, but we had to work hard to get it. When we finally did, the care was excellent and we were very grateful. After my wife passed away I was offered some councilling for my grief, but unfortunatley this amounted to one session only. I appreciated this very much at a very difficult time. Even though I was offered more, nothing ever eventuated and I was left to my own devices. I certainly could... Continue reading

  My late wife suffered a dibilitating illness over a 2-3 year period. In the last 12 months of her life we received some help via Palliative Care, but we had to work hard to get it. When we finally did, the care was excellent and we were very grateful. After my wife passed away I was offered some councilling for my grief, but unfortunatley this amounted to one session only. I appreciated this very much at a very difficult time. Even though I was offered more, nothing ever eventuated and I was left to my own devices. I certainly could have used some councilling at the time. I felt abandoned and forgotten. In time I moved on, no thanks to any palliative care follow up.

• Modbury Hospital Heroes

  by Brian Clements, over 3 years ago
  My wife was taken into plaintive care last January at the brand new Palliative Care Unit at Modbury Hospital after a somewhat traumatic experience at another local hospital the previous month.

  The respect and treatment received by my wife was nothing short of tremendous during her final 4 days of life. Her eldest son and I were able to stay by her side for her final 36 hours (in spite of Covid restrictions on visitors). The Professor and his staff were so kind and caring both to my wife but to family as well and her son, who is an... Continue reading

  My wife was taken into plaintive care last January at the brand new Palliative Care Unit at Modbury Hospital after a somewhat traumatic experience at another local hospital the previous month.

  The respect and treatment received by my wife was nothing short of tremendous during her final 4 days of life. Her eldest son and I were able to stay by her side for her final 36 hours (in spite of Covid restrictions on visitors). The Professor and his staff were so kind and caring both to my wife but to family as well and her son, who is an ICU nurse at a major interstate hospital was amazed at the level of care provided.
  The government need look no further than Modbury to see what needs to be provided at all SA Palliative Care units.