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

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/