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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  • janefinch01 .

    Annette sounds like a lovely person, and I am sorry for your loss, and for her family’s loss.

    How we respond to a cancer diagnosis is indeed a dilemma…do we go whole hog into the system? Do we choose our own destiny? I think that choice is up to the person with the cancer and with them alone…to choose their own path, to manage their own life and death.

    And regardless of their path, we are left to grieve.

  • T.E.Lawrence

    Very Nice Post Terry. Kind off puts things into perspective for us all !

  • Alan Law

    My mother died of lung cancer, you could always feel the judgement “did she smoke?”. She was 74 when she died and hadn’t smoked for 42 years. I agree with your comment and how cancer survival is so regularly regarded as positive. I was with my mum when she asked the oncologist at her one and only appointment with him “how long have I got?” And he replied we don’t like to tell patients because it can seem like a target…she insisted she wanted to know. “Six to nine months” was his reply. My mum got 6 more months a few of which weren’t too bad and about 4 quite tough but she still managed a wee smile most days.
    So much more work needed to increase lung cancer survival rates as currently it seems by the time it’s diagnosed it’s usually too late.

  • Turgon

    “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.”

    I am sorry but Mr. Maguire is simply not qualified to decide whether or not that was the right course of action. His “reservations” have absolutely no value. He is not an oncologist, a thoracic surgeon, a doctor or even a pharmacist or nurse specialising in the field. He may as a pharmacist have some medical training but I have an A level in physics and that does not mean that any “reservations” I might claim about technical aspects of NASA’s space programme has any relevance.

    I am sorry but Mr. Maguire has previously commented with supposed authority on the accuracy of mental health diagnoses again from a position of inadequate knowledge.

    A personal view from anyone is fine. However, if this is to be an authoritative web site when we have people making technical comments they need to be qualified so to do. We have had this previously when Korhomme made inaccurate comments about heart attack treatment (Korhomme is a retired surgeon) now we have Mr. Maguire at it again.

    I am sorry and yes it is a well written and heart felt piece but we need to be careful not to mislead the public. If one has cancer much the best idea is to get the opinion of an actual expert in the field and follow said opinion not the views of an expert in a semi related field.

  • Thomas Barber

    A sad tale indeed it leaves one wondering why cannabis is illegal while tobacco, which has caused more deaths than the total casualties in both the first and second world wars, is still nevertheless legal. Global corporations like the tobacco and pharmaceutical industries are the only beneficiaries from smoking related illnesses but its the sticking the head in the sand approach by politicians that allows tobacco to still be legally available to poison peoples bodies.

  • Cosmo

    Thank you for writing about Annette with such love and care.
    I wonder if an issue is that a cancer sufferer might that they must say they will ‘fight’ in any way possible (offered by medicine), as a way of being loyal and loving to their family, and to avoid inflicting more pain on them.
    Another issue, your article raises is that of quantity versus quality of life – as advised by the medical profession. I can see how difficult it is for medical practitioners to talk with someone who they think is ‘not ready’ to hear the worst.
    It’s not an exact science – my friend was refused hospice care, despite pleading for it – was sent home, and then died in hospital which she had always dreaded.

  • kensei

    Mr Maguire is commenting as a human being and not a pharmacist.

    His reservations absolutely have value. The choice between attempting to prolong life and the quality of life remaining is a difficult one. Ultimately the choice is down to the patient and not any Doctor.

    My grandmother died in March of stomach cancer. Prior to diagnosis she had various symptoms but they can be hard to connect to stomach cancer; I don’t blame anyone but had she or the family raised hell she might have got more extensive tests earlier that would have caught it. The final diagnosis remained a bit unclear until quite late on and even when it was confirmed the oncologist hedged when giving answers to straight questions around treatments, timescales, quality of life. I understand why, given both the sensitivities and the culture of compliant and litigation. And different Doctors gave slightly different spins. So “just follow what the Doctor says” is simplistic. Opinions need weighted accordingly but there is no silver bullet.

    My granny announced that she was leaving the hospital after an operation to unblock her stomach ahead of the Doctor’s advice. I argued with her that she was talking nonsense and she should just do what the Doctor’s said. She broke down in tears because she couldn’t face the hospital and the prospect of dying without going home. She was much happier at home and had much better quality of life for a month before having to go back in as the cancer progressed. i was wrong and she was right.

  • Lorcs1

    I don’t think anyone will be using this site as an Authoritative source for any subject let alone medical diagnosis or care. This site is based on personal opinion, both by posters and commentators, and usually not qualified by anything other than having a personal opinion.

    In this instance, the patient has asked Mr. Maguire to be involved in the conversation, probably based on the impression he made upon her in the 23 years they worked together. She obviously valued his opinion, therefore, his opinion constitutes a valid part of the blog post.

  • David McCann

    Kensei,

    We have rules on the site about playing the ball, not the man. You can disagree with Turgon, but don’t personally abuse him.

  • kensei

    He is an insensitive prick. Ban me, I don’t care. It wouldn’t be my first and he needs to knows he’s being one.

  • Sliothar

    David, I fail to see any personal abuse whatever in Kensei’s reply. I’d be grateful if you could show where the abuse was. Are you sure your remarks shouldn’t have been directed at Turgon for, as far as I’m concerned, his post was much more abusive and insensitive than Kensei’s.
    (Apart from K’s reply below, that is, which, in the circumstances, is quite understandable).

  • Thomas Barber

    Annette was indeed strikingly beautiful Turgon a little gem from a family that once lived in a tin hut next door to Mackies factory and she, like a lot of people around the same age from that particular area, were diagnosed with
    various forms of cancer around the same time, a fact which Terry Maguire
    could verify. Not everyone can take chemotherapy and not everyone
    responds to it, many are violently sick and open to all sorts of infections, everyone is warned that chemo can result in cancer in other parts of the body. The radiation is extremely painful a bit like being microwaved from the inside out. For those with later stages of cancer both treatments maybe prolongs life but in no way cures them. Terry Maguire being a pharmacist around the Beechmount area all his life handing out prescriptions to the sufferers and hearing their stories, people he has known most of their lives, is more than capable of giving his advice. Im not an oncologist, a thoracic surgeon, a doctor or even a pharmacist but having suffered cancer and being a survivor who has experienced the above treatment and watched others die from it I think its safe to say that I and many others would value Terry Maguires advice on matters relating to their health and wellbeing anytime.

    Thank you Terry.

  • Granni Trixie

    I don’t know Terry but from his post he seems to have a good heart. We need more like him!

  • Granni Trixie

    Well said.

  • Granni Trixie

    David: I know why you are playing the role of ‘honest broker’ but ‘honestly’ and for consistency did you not correct Turgon for the mean way he expressed his view about the poster?

  • Starviking

    Thank you for sharing this. May she rest in peace.

    However, I am puzzled by the fact that the consultant did not tell Annette how long she might have left to live. When my father was diagnosed with cancer around five years ago he insisted to the doctor that he did not want to know how long he had left. The doctor said that he had to tell him, and did so. I do not know whether it was because of laws or regulations – but it had a very bad outcome on my dad’s spirits, and so was very detrimental to his quality of life.

  • Greenflag 2

    People face end of life issues in different ways and that includes not just the individual who is facing the end but their immediate family and friends . Its not an exact science. Medical practitioners are also human beings but have to be seen as professional and somewhat detached from each event otherwise they could’nt function .

    The late Brian Friel the playwright could have undergone chemotherapy which would have bought him a few months extra life -he chose not to -but to live out his remaining time without the treatment . I know of several cases like Brian Friel’s some of people in their 50’s and 60’s .

    People face the end differently -Some want to know when- others would rather not . Some are more prepared than others . For some religious belief is a help for others its quite the opposite . Those who have a history of being abusers , drugs , criminals , addicts , or otherwise etc seem to have the greatest difficulty with their imminent demise. That is what I’ve been told by a medical professional who has seen hundreds if not thousands pass.