Mr Adami’s story

Eighty-six year old Mr Adami lived alone after his wife died, until he became ill with bile duct cancer. Over time he found it more and more difficult to manage at home so he moved into a nursing home. He was settling in well, enjoying the care and company, but soon became quite sick. He developed jaundice (yellowing of the skin and eyes), as well as severe abdominal pain, and his GP arranged for him to go to hospital.

Mr Adami’s surgeon put in a tube (stent) to clear the blockage that was making bile go into his bloodstream. The tube allowed the bile to flow into his bowel again and the yellowing of his skin and eyes faded. The surgeon also asked the hospital’s palliative care team to visit Mr Adami to help relieve his pain and to talk with him about his hopes for the future.

The team met with Mr Adami and, as Mr Adami did not speak fluent English, an Italian interpreter helped them to communicate. The palliative care team talked with Mr Adami about regular morphine tablets for his pain and laxatives to relieve his constipation. Mr Adami told them that he knew he was dying and that he would like to return to his nursing home where he felt safe. He would like to die there.

The palliative care team spoke with the nursing home staff, who said they would be glad to have Mr Adami back for end of life so long as they had assistance and coaching from community palliative care.

The hospital palliative care team referred Mr Adami and his nursing home care team to community palliative care services. They arranged for a nurse to meet with Mr Adami, nursing home staff and an interpreter the day after he was discharged from hospital.

The community palliative care nurse helped nursing home staff plan how they would look after Mr Adami. They also arranged for a palliative care nurse to call the nursing home each week to make sure they were happy that he was comfortable and content, and to give advice where needed.

The nursing home called community palliative care when Mr Adami’s health deteriorated and he was no longer able to swallow his morphine tablets. After consulting with the GP, the palliative care nurse visited to start a syringe driver (battery-operated pump) to administer morphine. He coached nursing home staff in how to manage both the pump and extra morphine if they thought Mr Adami needed it.

The nursing home staff felt confident to give extra pain relief on two occasions, and they were pleased they were able to make Mr Adami comfortable again. He died peacefully three days later.

Palliative Care - Personal Stories

  • Andrew's story

    Andrew was 23 when he was diagnosed with an aggressive cancer around his spinal cord. Despite five years of intensive treatment, Andrew’s cancer spread around his body. 

    Owing to pressure on his spinal cord, he could not walk or control his bowel or bladder. He was confined to bed and dependent on his wife Sally and the hospital team for his care. He had developed pressure sores, and a blood clot had also been found in his lung.

    Radiotherapy to Andrew’s spine helped to relieve his complex pain but he needed hydromorphone and ketamine via a syringe driver (battery-operated pump) to keep him comfortable. 

    The oncology team monitored Andrew’s condition regularly and changed the doses and medicines as needed. They also gave him daily injections to dissolve the clot in his lungs and to prevent more from forming. 

    At the same time, the oncology team supported Andrew and Sally’s wish to try every possible treatment, including all available complementary medications, while having Andrew at home. 

    The oncology team referred Andrew to community palliative care. They included Andrew and Sally in the process to get him home, ensuring that they understood that time spent in planning and coordination would keep him from ‘bouncing back’ to hospital. 

    As a result of this planning, when Andrew went home, hospital outpatient appointments were in place and community palliative care, the district nursing service and his GP were ready to share his care. They all had the necessary information and authorisations. It had been arranged that the hospital pharmacy would dispense the pain medicines that were difficult to obtain in the community. 

    Andrew had an electric bed with a pressure mattress arranged by an occupational therapist after a home assessment, and Sally had organised family and friends to provide practical support.

    Over the next month the community palliative care nurses provided regular monitoring of his condition, management of his syringe driver, and support and coaching for Andrew and Sally. 

    The palliative care doctor visited when Andrew’s pain increased and, in consultation with the GP, prescribed changes to his medications. A volunteer who shared Andrew’s love of football was allocated to spend regular time with him and to give Sally a break. 

    As Andrew’s health worsened and his wishes changed, the palliative care team adapted to Andrew’s and Sally needs. He decided not to have any more active treatment and died peacefully at home, surrounded by the family and friends who had given him and Sally so much loving support.

     
  • Katie’s story

    Katie is sixteen and has spent long periods at Royal Children’s Hospital being treated for rhabdomyosarcoma, a childhood cancer that affects soft tissues such as muscle. 

    She knows now that the hospital team cannot cure her cancer and their focus has shifted to keeping her comfortable and helping her to achieve what she wants most. Katie wants to go home.

    Getting Katie home is challenging. She has complex pain that needs daily review and management of a syringe driver (battery-operated pump) that delivers medicines through a needle under her skin. 

    Katie also has tumours in her lungs that sometimes make her cough up small amounts of blood, and there is significant risk that they will cause a large bleed. A large bleed would be a sign that Katie may be dying. Katie’s parents and younger brother Tim know this and are scared of taking her home to their rural farm. But Katie is terrified of staying in hospital.

    The treating team and Katie’s parents agree to take her home. Over the next few days they plan her return to the local district nursing service and her GP for end of life care. 

    The district nurse and social worker will visit the day Katie returns home. The consultant palliative medicine specialist will visit with the district nurse the next day. Equipment is in place. 

    Katie and Tim are already linked in with CanTeen so they can continue to chat with other young people in the same situation and get support. 

    Arrangements are made with the local pharmacy to ensure supply of medicines. Katie’s treating team prepares her parents and Tim for a possible large bleed and what they can do; the local team will continue this coaching. The Victorian Paediatric Palliative Care Program offers multidisciplinary telephone support and advice to the local team as often as they need it. 

    Of course Katie’s parents and Tim are still worried about what might happen but they now have a quiet confidence that they can achieve what matters most to Katie – to stay at home.


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Planning and decisions about end of life

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This page has been produced in consultation with and approved by: Advance care planning, Department of Health & Human Services

Last updated: May 2018

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