Lovely Annette is gone. The ethical dilemmas of end of life care…

Lovely Annette is gone.   She worked for me 23 years  and over that time not once did I have cause to admonish her.  To my shame she had a few occasions on which to admonish me.    She became the unofficial staff spokesperson willing to raise issues yet keen to seek compromise and almost always did.   In 2010 fearful of staff job losses due to adverse trading conditions she got a commitment that there would be no salary reductions or lay-offs.  It was an easy one; I have great staff and had no intention of letting go or reducing incomes.

Seldom off work, a painful knee causing her to take sick leave  indicated something serious.   Following a two week planned holiday she failed to return to work.   Physiotherapy, NSAIDs and paracetamol were ineffective for the pain and eventually she was diagnosed with bone cancer; a secondary from a lung primary most likely the result of a lifelong smoking habit.  I tried, I really did, but I could never get her to quit.

The bone cancer, in addition to the severe pain, greatly limited her mobility.  Always bright, always with a witty repost she was now in a dark place.  She knew it was serious and she knew stopping smoking was irrelevant.

A hospital appointment was arranged to work out a care plan.   She invited me to visit her at home and, over tea, asked if I would attend the appointment with her and off course I agreed.   The appointment was to considered an knee operation; the knee bone would be removed, replaced with a flexible metal rod and following two weeks of healing  chemotherapy sessions would begin.    The problem, and the reason she asked me to attend, was she simply didn’t understand her consultant.  Her one big question was “how long do I have?” but she lacked the courage to ask it.  On my visit, in her bedroom with her sisters and husband and among her cherished personal things, she asked indirectly.  She asked me if I thought, since they were considering a knee operation, that itself suggested at least a year perhaps more.   They wouldn’t waste that expense on her if she only had a few months to live she reasoned.   I cared a lot for her but I couldn’t lie.   If she wanted to know the answer, I told her,  she needed to be prepared for the  answer.  I did not know, was not qualified to know but her consultant did and he would answer if asked, I warned.

At the hospital we got the cold facts;   non-small cell adrenocarcinoma of the lung with 1.99 +ve tags which had the genetic markings of a gastric cancer and that was confusing the consultants.  Did she have irritable bowel over recent years?   No.  She would have to undergo an colonoscopy.   This procedure, requiring another day in hospital,  was inconclusive.  It was it seemed a lung cancer primary.

She agreed to the knee operation since it offered mobility.  I had my reservations.  Stage 4 Lung cancer with a significant secondary did not normally give much time and certainly not time to spend in  a  hospital bed.  But the system has a hypnotic power that draws us on into its purpose like the Pied Piper of Hamlet.  She did not ask the big question.

That evening after the appointment I visited her at her home.   She and the family were jubilant; the knee operation, a period of 10 days for healing, then the chemotherapy would give her some time, time to enjoy doing a few things her life and circumstances, thus far, had restricted.

The knee operation was a complete technical success and physiotherapy got her on her feet more or less.  The sharp blinding pain of the cancer was gone but now she had a different pain; a healing pain she reasoned but her consultant was concerned with something on her hip bone and her ankle bone.

She returned home to heal from the knee surgery but after the two weeks she had lost considerable weight so the first chemotherapy session was cancelled.  Two weeks later she cancelled the session she was now very unwell and was having problems breathing.  She was put onto dexamethasone to shrink the tumour but this did not work so she was brought into hospital.   She was palliated and two weeks later, on a Wednesday in mid August, at noon, she died.   She was 47 years old, she was strickingly beautiful, had two children she adored, loved, and was loved by, a husband and three sisters and left behind a distraught father and mother.

Her care by our health service was exemplary.   What could be done was but it was to no avail and I wondered would it have been better to do less.  I knew when she got a diagnosis in May, like my father and a very dear aunt with the same diagnosis, that it would be a few months and it was.    Cancer survival rates over recent years have shown impressive improvements but perhaps advertised in too positive a  light.   For certain cancers survival rates are great, for others, particularly lung cancer, we are not as smart as we think.  It still beats us and when we are in Stage 4, the stage with secondaries, our time is more or less up.  Had she stopped smoking when she was 30?  Ah, too late now.  I will miss her a lot.

Terry Maguire is a pharmacist in West Belfast. This post was published with the agreement of Annette’s family. 



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