"Receiving a terminal diagnosis."

I recently attended the Medical Oncology Clinic for results from a CT, bone scan, ultrasound and blood test, after a lump was detected at my regular oncology review two weeks earlier. Although it was a devastating Stage IV cancer diagnosis, the oncologist I saw, whom I had never met before and is not a breast oncologist; was not experienced or skilled enough for this situation; was not able to answer my questions; rushed me through the appointment; and showed no compassion. At no stage did he say that I had Stage 4 or metastatic cancer (I believe that I gleaned that from test results or reports). The doctor only told me the scan shows metastatic activity.

When I asked about my prognosis if I do not have further treatment, the doctor advised -I don't know - without any further explanation. I felt that I had no support and a lack of direction as to where to from here. When I advised the doctor that I was reluctant to have radiation or chemotherapy due to serious complications following previous radiation (but wanted further advice in order to make up my mind), he assumed that I was refusing treatment. The doctor did provide me with information about targeted therapy drugs that would be recommended, but he didn't spell out my treatment options or diagnosis.

The doctor did not examine me, ask if I was currently feeling unwell or experiencing any symptoms, or offer any advice or treatment to meet my immediate health needs. When I asked for a referral to see a lymphoedema physio as I was experiencing pain, tightness and increased oedema in my right chest and arm, I was told I would not need one and was left to make my own appointment with the breast clinic. But when I then went to the clinic to ask for an appointment, I was told that the oncologist needed to make the referral.

I advised the doctor of the forthcoming date that I’m booked for a pre-admission appointment for reconstructive surgery and asked what the implications of the new diagnosis were for the planned surgery. He said - I don’t think that will be happening now - but made no suggestion of communicating this with the plastic surgery team or indicated whether I would be formally advised of this. I have therefore arranged an appointment myself with my plastic surgeon to discuss the matter.

I asked if the scans showed any sign of metastatic spread to my liver and the oncologist said he didn’t know because the liver wasn’t scanned. He said he would organise a referral for another CT scan to include liver and brain. But when I later read the CT report, my liver had in fact been scanned and it's condition described in detail. As well as possibly leading to unnecessary tests, I felt his response showed that he had not read the reports properly.

The doctor seemed mainly concerned to get me referred on to the Radiology Oncologist and get me out the door. I was left with no clear prognosis, no advice on management of symptoms, no clear explanation of medications (i.e. whether they reduce or slow progression) and no information was provided regarding the blood test results. When I left the clinic, the doctor ushered me out the door and as I turned into the corridor I heard him say something from behind me about being sorry it wasn’t better news. When I turned to thank him, he had vanished, leaving me in the treatment room corridor unsure whether the appointment was over and if I was supposed to leave.

I felt so dazed and confused, I think if I’d left the hospital at that point, I may well have stepped straight in front of a bus. It was only after I independently sought a meeting with a breast nurse in the breast clinic that I received enough information, compassion, and the assurance that a multi-disciplinary team would discuss my case the following week, that I felt it was safe for me to leave, knowing there would be some coordination across departments from this point on.

I would like to know what the hospital’s protocol is when giving terminal or life-limiting diagnoses in clinics. Is extra time allocated (akin to a GP double appointment)? Should a relevant Clinical Nurse Specialist also be present to offer further support and information? What training do specialists get in breaking bad news from a patient-centred perspective? My experience added an extra layer of avoidable trauma to a situation that was already devastating.

On a further matter, I subsequently received a phone call following my initial appointment from the Radiation Oncology Dept to advise that an appointment had been made for me to be seen by another doctor. The caller only identified herself by her first name and said that she was calling from Fiona Stanley Hospital, before asking me to confirm my identity by stating my full name, address and DOB. I was reluctant to provide this without establishing who I was talking to and instead asked her which department she was calling from. She replied that she could not tell me until I had identified myself by providing the above information? She was the one calling me, not the other way around. How could I know she was legitimate before divulging my personal information? It seems the security concerns only go one way. In my opinion, she was curt and robotic, and ended the call without even saying goodbye. Although this is a relatively minor issue compared to the details I have outlined above, coming on the heels of everything else, it further compounds the perception that I am just a number, and that hospital procedures are designed purely from a risk management perspective and without awareness of the impact this has on patients.

I have never had this experience when phoned to be advised of appointments by other departments at FSH. Perhaps this is a Genesis specific policy, which raises the question about whether a private company operating in a public hospital is required to ensure its policies are consistent with the rest of the hospital. It certainly is consistent with my many contacts with FSH, in that it shows a hospital operating in discrete silos where continuity of care is often absent, and where patients consistently fall through the gaps between departments that rarely speak to each other. I have dedicated 3 years and hundreds of hours to sitting on Fiona Stanley Hospital committees as a consumer representative, trying to make a difference and trying to improve the patient experience. I feel heartbroken that my efforts appear to have been for naught and am appalled that any patient should have this kind of experience at such a difficult time.