One of the impacts of COVID I have noticed in the past two years is the increase in late diagnoses and subsequent late referrals to palliative care. Access to medical care shifted towards virtual means around the world and people may have put off visits to the doctor as for a while it was not easy to be seen in person.
There have been many late and in some cases too late referrals to palliative care. This creates a scramble situation as our services try to respond to the urgent need. Often in the last two years, we have received patients transferred for end-of-life care who may only have been diagnosed mere weeks before death.
We do the best we can to help them but it can feel rushed. A connection needs to be made to help the patient and their family. Rapport needs to be built and in an ideal world, we would like to have more time to build a therapeutic relationship before the patient becomes too unwell to engage with us fully. We don’t always have this luxury and have to make the connection faster. This is not a smooth process, the stakes are higher, emotions are rawer, and stress levels increased.
A short therapeutic relationship also means disconnection needs to occur in a faster manner as well. We are involved in some cases only for short days or hours in some cases. The ability to connect and disconnect without losing your humanity is an art to be developed. Strong boundary perception is important otherwise we couldn’t continue doing this job day in and day out. A delicate balance is required between connection and disconnection. Attachment and detachment. Involvement but not enmeshment. Empathy and compassion without entanglement. Human commonality and professionalism. We try our best to do enough.
I started writing this post two years ago, and I tried to complete it this time last year but I wasn’t able to. I have finally completed it today, and it serves as a sneak preview chapter for my upcoming book Bedside Lessons which will be available for purchase on Amazon Kindle on 09 June 2022.
Death Jumps The Fence – I miss my mum
Every Friday I usually wear a fish neck-tie and chips socks, this is in honour of my parents who ran their fish and chip shop for 35 years. Friday was always the busiest day thanks to ancient papal decree. Mum loved to work in the shop and chatted to generations of families who were regular customers. Mum’s eyesight was destroyed by an autoimmune condition called Uveitis. This stopped her from driving her car that she had owned since it was brand new. A red 1982 Toyota Corona – Popularity has decreased since 2020. Not being able to drive limited Mum’s independence. Her partial blindness in one eye, and near total blindness in the other didn’t stop her working. Somehow she would still cross one of my hometown Napier’s busiest street to walk to the shop. She loved serving her customers and always had a friendly smile for them. Apart from rheumatoid arthritis and a blood disorder, Mum’s health was good until her final illness.
It all started early one morning, when severe back pain woke Mum up. She was rushed to hospital and couldn’t move her left leg. The initial differential diagnosis was of a stroke but the head scan did not reveal any brain issues. Further tests discovered a blood clot which had blocked the spinal artery which supplied the area of spinal cord controlling the left leg. Mum had been troubled by a blood disorder for the previous five years. This led to her blood being thicker than usual, which may have caused the clot formation. Blood thinning medication was started. Other tests discovered a suspicious mass lesion in her chest. A biopsy was requested.
Whilst awaiting the biopsy Mum was reviewed by a lung doctor who bluntly told her that she had cancer, and that she would need to have intensive treatments. These would need to be done at the regional cancer therapy centre, two hours drive away. This sent my Mum, who was always a bit anxious, into a tailspin. She stopped eating, couldn’t sleep, and was inconsolable. Mum had a good memory throughout her life, but in the months prior to this illness she had started having short term memory loss. Looking back at this her illness had likely taken its toll on her memory. Two days after the bluntly delivered unconfirmed diagnosis Mum had forgotten what had been said, and was able to continue her recuperation. She knew that a biopsy had been arranged but could not remember what for. The prospect of it terrified her.
I flew back to Napier on a Friday morning to help Mum get through her biopsy. She was scared and needed her hand held. The radiology team who were performing the biopsy ushered me in the room, and I gently told Mum to take deep breaths. I explained to her in Mandarin Chinese, “There will be some pain from an injection. Then your skin will go numb. They’re about to put in another needle. It shouldn’t hurt, let me know if it does. There will be some pressure but it shouldn’t hurt.”
I was working on the liaison psychiatry team in my final year of medical school. I went to meet a patient that had self-referred, which was unusual. Psych liaison provides psychiatric input for patients who also have medical issues that have brought them into hospital. I went with the nurse specialist to see the patient, an Englishman in his mid-thirties.
Work had brought him and his Latin American wife across the world. He was a nature documentary maker and had been based in the lower South Island filming the local wildlife. Just before Christmas he became unwell with a severe nosebleed, which required hospital intervention. Simple blood tests revealed grossly abnormal results. Acute Myelocytic Leukaemia (AM bloody helL) was the shocking diagnosis which destroyed their plans for Christmas and life in general. An urgent admission was arranged to our hospital’s Haematology department, which served the entire region. Harsh chemotherapy needed to be started otherwise our patient would’ve only had days left to live.
I thought to myself while I was talking to him today, I’m really going to miss this guy, who I’ve been calling mate.
Some people will really pull on your heart-strings. Mate is one of those people. He’s really unwell, and his time is very limited, but he’s still charming the ‘socks off’ of all of the ladies. He’s always very polite, and well-mannered. I’ve been looking after him for the past week or so, and he has been deteriorating on an almost daily basis. He never complains and has never liked to cause a fuss. He’s a shy man, who doesn’t want to be a nuisance, I’ve had to almost beg him to ask for pain relief when he needs it. He has been through an awful lot of pain. It has improved since he came under our care, but it is still there. He has never complained, either before or after his illness was discovered. Continue reading →