Patient Centredness – does it matter and how can we do better?

Last Sunday I sat and held Grandma’s hand as she died. She had advanced metastatic stomach cancer and was 90 years old. Unbelievably throughout her whole illness this was the first time she had ever been admitted. She had always said she wanted to stay at home but in the end the intractable vomiting was not able to be managed adequately in the community, so an urgent admission to the hospice was arranged with Grandma’s agreement.

When I went to see her on the Saturday in the hospice she said to me “I’m not sure I should have come here.” She was really  feeling the sedating effects of the anti-emetics and analgesia, having been such a bright, cognitively intact lady and the fact that she couldn’t articulate herself properly was really frustrating her. As the over protective medical Granddaughter I reviewed her medication with the hospice doctor and agreed a non-sedating regimen of anti-emetics which I took care to explain to Grandma so she was able to understand. That was the last time we had a conversation.

The following day we received that dreaded phone call to come to the hospice as soon as we could and found Grandma comatose. There were no obvious reversible factors and she was commenced on an end of life care pathway after discussion with us. Grandma was put right at the centre that day. The nurses were fabulous and took so much care repositioning her, allowed me to help with some of her personal care and sat with us for ages after she died. This is my vision of perfect patient-centredness with compassionate, caring staff that were competent and genuinely seemed interested in the lady they were looking after even following her death.

The following Wednesday I attended an Oncology out-patient appointment to receive some scan results. My Oncologist had very kindly agreed to see me outside of the usual sarcoma clinic arrangements due to some unmoveable work commitments. I haven’t been seeing Oncology routinely for a number of months and feel disengaged from the whole process. I am sure one of the main reasons for this is because of the psychological distress going to clinic causes me. This may appear irrational but working yourself up before the appointment, being made to sit for hours on end surrounded by people at various stages of their cancer journeys and the whole ‘scanxiety’ process is draining emotionally to say the least. At my last clinic appointment it was the final time I had seen a dear friend and cancer buddy alive. She looked so ill and selfishly speaking seeing her in such a state of disarray was an uncomfortable window into my future.

I think DtM picked up on my reluctance to engage with Oncology anymore especially when he had to convince me it was a good idea for him to examine my abdomen. We discussed the distress that the clinic visits cause and how that could be alleviated. He himself described the Monday morning sarcoma clinic as “a cattle market”. Is this a patient centred way of practising medicine? I completely understand the rationale for seeing all the patients with a particular condition at one time as a clinician but I wonder if we could do better to relieve the associated anxieties? I am pretty sure I am not the only patient who finds the whole process distressing. Could we schedule clinic appointment times better? If a clinic always runs 90 minutes late I’m sure the timings could be altered to help reduce the amount of time patients spend in the dreaded waiting room. Could we reduce the amount of time patients wait for scan results? Possibly by making better use of technology?      

I am lucky to be looked after by some lovely clinicians who try their absolute hardest to be patient centred, but on occasion the NHS system restricts this. Perhaps it is time for a whole new rethink of how we run things to make sure our patients are put firmly in the centre of our practice…

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22 thoughts on “Patient Centredness – does it matter and how can we do better?

  1. Perhaps there should be a formula (first appt time, time drs arrive, no of pts booked for each time slot, no of DNAs, total no of pts, total no of dr minutes, time allocated per pt, time required per pt) work out the ideal, add a small number for unexpected and then audit to see if the 90 minute overrun is reduced. My (patient) experience is to arrive well in advance of my booked time so that I don’t get anxious about being late, suspect there are others like that, especially if they have to come by bus, half hourly service might mean arriving an hour early, in case. Have running info, so people know they have time to get a cup of coffee before they start their wait. Have the coffee bar just outside outside the OPD, reduce the number sitting anxiously waiting. Ask staff to go into the middle of the chairs to call out the name of the next pt, not call from a distant door. Ask staff to smile, say good morning and shake the pts hand. Only the running info system has any costs.

  2. Kate,

    I’m really sorry to hear of your grandmother’s passing but pleased that it was easy and comfortable for her and all of you.

    I know I always say your posts are wonderful but this one is especially so.. Thank you so much for writing it and challenging all of us to make care better.

    AM

  3. Kate, exactly the same happened to our son Neil who died 4 1/2 yrs ago. We couldn’t understand the agonising waits or how a consultant could be running 90 mins late half an hour into the day. I had really hoped things had improved. I am battling at this moment against the same professional-centred attitude at my local hospital. Keep fighting!

  4. It’s not just the patient I.e. you and at this moment my beloved dad that is kept waiting for scan results. It affects the whole family as well, My dad had a CT scan on his liver on Wednesday last week whilst being an inpatient it took them 2 days to report it to him during ward rounds on Friday. We as a family have had to wait 2 long days to find out the result .. In this case withdrawal of chemotherapy as it “isn’t working” . No help with “what happens now”….2 whole days of not knowing what is happening was torture. Why does it take them 2 days to report to dad and us as a family the bad news. He is sat in a bed in the same hospital for gods sake !!!! Makes my blood boil

  5. We met at Dying Matters event and I think of you often. (You spoke straight after our film Beyond Goodbye).
    I am glad grandma was so well looked after. And I wish you strength in your journey. All that waiting must be so anxiety provoking. Anyway stay in touch via our website and well done for all your amazing work. Jane Harris and Jimmy Edmonds x. http://www.beyondgoodbye.co.uk

  6. I have just been reading your story in today’s Times Magazine and am really impressed with the way you have chosen to deal with your situation and the various issues arising from it. I am glad that your husband is now “on your side” although it must be hard for him seeing you so positive, even knowing what the final outcome will be – but it’s great that you want to “educate” all of us here in the UK (and probably further afield) about dying and how we can cope with it. As a Christian, I am not frightened of dying, but the manner of my dying, so if we can bring it out into the open, then there won’t be such mystery and ignorance about this.

    I am so pleased that you were able to be with your Grandma and that she had a “good death”.

    Bless you on your journey.

  7. I worked as a nurse in the community and then in Palliative Care for several years and so many patients talked about what they wished they had known about serious illness and dying, that I wrote a book about managing illness at home based on their experiences. I admire you Kate and I believe you are dealing with your illness in the wisest, most loving, and emotionally healthy way possible. I hope there are not too many hurdles in your journey and that you are able to manage the end of your life in the way you plan.
    Gill Pharaoh

  8. Inspirational article in today ‘s “Times”.i can empathise with your feelings regarding clinic appointments.I was misdiagnosed(I am one of the lucky ones),but during the horrible days of tests,scan,and clinics,I hated being surrounded by fellow cancer sufferers all eager to share their stories- I found it extremely difficult ,and had to resort to putting on I phone headphones and burying my head in a book.The delay in receiving scan results was torture,especially when you are told that the results could lead to a terminal diagnosis.Things need to change.

  9. Hi Kate,Just read the article in the Sunday Times whilst on holiday with my daughter and granddaughter in Majorca.I retired as a GP with a lot of experience of terminal care at home 3 years ago and my husband has been treated for advanced prostate cancer for 8 years(currently on his 3rd course of chemo) so very aware of lots of what you are going though,also lots of sympathy with your husband,it is very difficult being supportive and dealing with one’s own emotions over a long period of time.You are both very courageous to share all this with us all and I wish you both all the strength and courage in the world.I will share your journey in the hope it will aid me in my own.

  10. Kate, I first heard your story today reading the article in the times. What an inspiration. I’m just so sorry that you are faced with this but what an amazing thing you are doing; giving hope and strength to others. By laying yourself bare to social media there will always be the sick, sad people who try to get you down, but please, for the sake of others and more importantly yourself – don’t waste a single second of your serendipity on them. You are amazing. I wish you well with everything you do x

  11. Thank you so much for your article in The Times on Saturday. I deeply calue your complete honesty and it’s helping me receive a little more insight into the mindset of someone young facing terminal illness. We lost our 23year old son five years ago to a rare cancer of the heart and were able to care for him at home. The support we had in Leeds from our family, St James Hospital, Wheatfieds Hospice Outreach Team, Distict Nurses and church family was exemplary and in the midst of our anguish and sorrow we were blessed in knowing that we enabled him to die at home. Praying you’ll continue to find the right help and the right words to share when this feels appropriate.

  12. Thank you for this. I have just discovered you in the last 24 hours. I am a 49 year old wife and mother. I was diagnosed with bony mets in March I I was given the all clear in December so a huge shock as you can imagine. I know my life is shortened but I feel hopeful for the time I have left. Lots of plans. I am less afraid of death than I ever imagined I would be. After the initial shock, like a kick to the stomach I felt weirdly calm. I never thought I would feel that way if faced with this prognosis. My husband, a surgeon, took it much worsen me. I would love it if you followed me on twitter. My friends and family don’t follow me on there so I am fairly candid. My twitter name is @poshlindy
    Your comments about waiting rooms full of people struck a chord with me. Because of my husband working at the hospital my consultant fits me in early so I miss the general hubbub of the clinic. I feel lucky and guilty about this at the same time. I don’t want to see really ill people, that is my future, I only want to see the next few months of future in front of me.
    Thanks again for this blog
    Lindy

    • Thank you for your kind words Lindy and I hope you are feeling as well as you can possibly feel at the moment. I know what you mean about the ‘calmness’ – I feel unbelievably calm about the whole situation. Lots of love, K xx

  13. Kate, I read about you in the Times magazine. You’ve got a lot in common with my wife, a consultant oncologist who died last year from angiosarcoma. Except of course that you’re alive. I admired her approach to her disease and I admire yours.

    Good luck

    paul

  14. Kate, I heard you on the Today programme and am now following you and reading your blogs. Your comments about how you felt waiting to see the oncologist really hit one to me.

    I was diagnosed with breast cancer last summer, following a routine mammogram. It was caught very early and hasn’t spread but I did have to have 15 sessions of radiotherapy and the waiting room caused me more stress than any of the procedures. Illogical I know, but then logic kind of disappear when you have to start thinking about how your family will cope if you die.

    Even though I knew that the treatment was very likely to be successful and that taking Tamoxifen would further reduce the chance of the tumours coming back, seeing and endless stream of very ill people, some very young, made me so frightened.

    Not sure how this can be remedied but it is comforting to know I am
    not alone in responding like this. Thanks .

  15. Kate, what you are doing is inspirational.
    I heard you on the Today programme this morning, and realised that I was literally holding my breath, as I waited for your answers to some of the questions.
    After our experience as a family, losing my beloved mum to oesophageal cancer, I KNOW there has to be a better way to deal with dying and death than currently exists.
    I personally don’t believe in an afterlife, I believe that we live on in the hearts and minds of people we touched. And you are reaching so many people.
    I don’t need to wish you courage – you already have that in abundance x

  16. Kate,
    You are an incredibly woman. We definitely need people like you to speak openly and honestly about death and dying.

    My husband died in 2009, it was a long death and there was little dignity in the end. He died at home as he wanted however, he was terminally agitated. The three days before his death, his last words to the world and specifically to the palliative nurse were: “I want do die now, this is not living!” He then became terminally agitated, feverish, his heart rate, respiration rate increased signficantly and moaning sounds resonated loudly in our home. I repeatedly telephoned the hospice and the out of hours doctors. I urged our GP and marie curie nurse to end his life him when they visited. They were embarrased to talk about such things so honestly and fiddled with their wedding rings. Two hours into their visit, they asked me to go upstairs and then he died. I do like to think they helped him but clearly I will never know. Clearly his death was not especially pleasant and not the death that he had wanted and deserved. A few months after, I asked to speak to the marie cure nurse. She was very uncomfortable on this subject and became ‘dizzy’. I was not aportioning blame but merely wanted to talk about terminal agitation….

    Your directness is refreshing. I sincerely hope you continue to enjoy your life and when death is imminent, you have control and it is pain free.

    • Charlotte
      Thankfully it doesn’t have to be like that. My wife died peacefully at home with the aid of a syringe driver loaded with diamorphine and midazolam. I’m sorry that your husband wasn’t offered this treatment.

      • Hi Paul
        I’m glad your wife died peacefully. As an ex Student Nurse I have seen terminal agitation treated appropriately and a ‘peaceful’ end reached. Midazolam I think can be given ad finitium if the doctor can justify the reason e.g. symptom control. There is I believe the ‘double doctrine’ effect, that is whilst a symptom may be relieved, the medication may cause other effects, for example, suppress breathing, which may hasten the dying process. All of this can be done provided the doctors can justify their decisions…..I appreciate not everything can be controlled but I literally had to beg, whilst it was obvious my husband was having a hellish time. The professionals kept on quoting Harold Shipman…..whilst twiddling with their wedding rings and looking at the floor. Richard was devoid of dignity.

      • Hi Paul,
        It is good to hear of your wife’s peaceful death. I do wonder whether your wife given the help she needed because she was a medic? Having read Kate’s first book I felt quite fearful that without her medical knowledge she would have had a harder time negotiating the care she needed. This is a real fear of mine. How can doctors really know how the patient experience feels when they understand a great deal more and can be involved in decision making for their care?

  17. Cardiology waiting rooms are the worst (for me). I’m usually thirty years younger than any other patient there, often if children accompany their parents, the children are older than my parents. Can you imagine the pitying looks? There isn’t even anything much wrong, I just need some monitoring, but I dread those appointments and surprise surprise I still haven’t got the results of the last visit.

  18. Yes the cattle market sums up my experience of clinic. The worst part is your name being called and to be taken into an examination room where you wait another half an hour. As most of us are desperate to see the consultant we don’t find it easy to complain about the process. Twice when I have been to clinic the wSit haz been so long staff have come round with complaints forms. Will filling one in change anything? At the moment I have four very good friends who are also on the cancer journey and we have all had the same experiences of clinic. But I still say thank you NHS.

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