Vigil

Last night I worked with a doe eyed young woman who is about to embark on her student nurse training in University.
Our conversations lead us to the subject of the care of the dying and she showed considerable knowledge of the use of end of life pathways,associated protocols and research but had little practical knowledge and experience of what I think a nurse's role in the act of a vigil.

I listed   of my nurse " rules" to her as we mopped and polished the day room

  1.  Be clear from the get go who you are and why you are there.Relatives are distressed and seldom are able to listen to long winded explanations and instructions. Give them permission to ask questions and to quiz you about what is happening.
  2. Be calm and move slowly. Don't rush. Make sure the bedpace is orderly, clean and tidy. It sounds old fashioned and a bit twee but order and calmness breeds order and calmness
  3. If the patient is monitored transfer the digital readouts with its waveforms and noise into sleep mode ( where the nurses at the nurse station can see the monitor readings but the family cannot)
  4. Explain everything you do
  5. Follow your protocols. They are their to maintain your patient's comfort and dignity. Many medications will combat the more distressing symptoms in the dying process, such as a " wet " chest or cerebral irritation.
  6. Encourage breaks out of the vigil room, provide an overnight room to use if available and bring in regular drinks, water and food if possible. Provide teapots and hot water jugs as the process of tea making will give the relatives something to do. Allow family to help with personal cares if they wish to but don't push it if they decline.
  7. Find out more about your patient ; often anecdotes  and family stories can be shared at this time especially when the patient perhaps would have had a chronic condition which exhibited itself into a change of personality and abilities.
  8. Be flexible . Pets, children and best friend Eddie who can't make visiting until 2 am must be catered for . 
  9. Be honest, often through experience you can judge when a patient is going to suddenly deteriorate but that be not always be the case. Patients can hang on for days
  10. The dying process can affect personal and family dynamics considerably and conflicts can arise and quickly get out of control. Be sensitive to these, disappear when needed but be prepared to control the situation if needed. Anger is an emotion most readily mobilised in grief 
  11. Acknowledge the surreal nature of the situation and be aware that relatives can be affected deeply by the " normality " of life outside the vigil room. 
  12. Don't use euphemisms for death . Be clear and unambiguous in the use of your language.Be very sure that patient has actually passed away before you confirm it
  13. Be kind....Explain that the patient may be able to hear a loved one's last comment even though they may be hypoxic or deeply sedated. 
  14. Be prepared for anything to happen. I have been slapped by one grieving wife and have had dozens of distraught traveller families force their way on a ward to show their respects.
  15. At the end of your shift personally introduce the nurse taking over to the family. Don't rush this  and say don't gong nice and positive about your colleague . This is especially important if you have worked alongside the vigil a long time  
" I've never seen a dead body" my co worker admitted as soon as I had finished my speech
  1. So I added number number 16...all ways support your junior and less robust colleagues 

103 comments:

  1. In essence, nursing is a practical job but good nursing is always enhanced by kindness, common sense, and empathy. Unfortunately, these qualities cannot be taught. That's why I am not convinced about the efficacy of the modern academic approach as promoted by universities. Nursing never used to be like that.

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    1. Thats where good mentorship comes in yp

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  2. An immensely valuable list of do's-and-don'ts for simply everybody, even if not as directly involved as you can be. Thank you.

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  3. Barbara Anne1:58 pm

    What an excellent list. You didn't say, but I'd add specifically that tissues should be provided in bulk.

    Also, I found it was comforting for most family members to be given permission to touch their loved one, hold their hand, gently brush hair, and such. They also need to know it is okay to laugh.

    As you wrote, hearing is the last sense to go so all visitors should be told that is true.

    I remember when I was first holding vigil at a bedside that I was amazed there was a detectable absence when the person died. Not just a lack of noise, but the person inside the body wasn't there any longer.

    I think you'll find you're a born hospice nurse. :)

    Hugs!

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    1. Yes touching and indeed helping with nurding duries is vital

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    2. You're right about the absence of the person from the body. I was with my husband when he died last year. He was under hospice care but it was in the middle of the night and I was alone. As soon as his last breath left him there was a complete transformation of his body. Whatever had been "him" had left. When the man from the funeral home was about to take him away, he asked me if I wanted one more look to say goodbye but I said no. I had already said goodbye when he was still in his body and I didn't want to remember him that way.

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  4. What are the rules on hand relief on request? Asking for a friend.

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    1. Not that professional mave

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    2. No matter how handsome ,
      And it would be seen only if you held a BUPA card

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  5. Having taken your points on board I shall make sure to lessen my nurses' distress by trying to remember, and convey to them, your list when my time comes. Though I dearly hope they'll just leave me to snuff it in my own time and disgrace. The Angel aka Apple of my Eye will know how to deal with me when I'll be unwilling to surrender to take my last breath.

    I can say the above with some conviction. Unlike your doe eyed apprentice I saw my first (human) dead at the tender age of eight years and five months. I saw her dying, saw her barred up, chapel. At the funeral, I was front line between my mother and my grandfather; I almost faltered when my mother made me pick up some damp soil, dark and hard, to drop on the coffin down there, the coffin with the remnants of who - until then and a long time later - constituted the most important person in my life.

    Thanks for indulging me by letting me relate the unthinkable.

    But, yes, back to planet earth and reality, of course you are right, among the "professionals" there needs to a "code of conduct" as it's now called. I don't wish to bring the mood down but, seeing my father-in-law in the hands of palliative care, well paid for, dying as "good" a death as one may wish for, and, a few weeks ago, having taken the wrong turn on my way to a neurological ward, seeing REAL end of life in the last throws of contorted horror (I wish I were a painter - little has seared itself into my mind visually more than that moment and its image) ... and now I am petering out because I don't really know where I am going with this ...

    U

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    1. What Tosh you write
      Today's post is in support of relatives and what thy do for their loved one It's nothing to do with lessening the nurses ' anxieties , although having practical pointers in the support of relatives always gives a nurse confidence.

      I have been in hundreds of such situations , hundreds, so understand the whole subject so much differently and hopefully do much more objectively than you

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    2. Ps leave the subject to an expert

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    3. What "tosh" I write? Are you for REAL answering like that to a heart felt outpouring?

      You'll be relieved to know that this is my last piece of "tosh" I'll ever write to you. You may pride yourself on your compassion. You have little (at least for me). I wrote from my heart and you just shit on it. I was in two minds before hitting "send" as opening up myself does and doesn't come easy at the same time. I wish I hadn't [hit send]. You and I are through, "Expert".

      U

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    4. Anonymous3:08 pm

      Sound advice John. Nurses are in the frontline ... interacting with patients and their families, who are typically saddened and stressed by situations beyond their control. You are a good mentor to inexperienced nurses, not only because of your vast experience and strong nursing skills ... but more so because of your compassionate and kind heart.

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    5. "I shall make sure to lessen my nurses' distress by trying to remember, and convey to them, your list when my time comes."

      I found this line insulting

      The whole point of the post was to illustrate the human and pragmatic areas of care of the dying missed by protocols. The protocols are there to maintain quality ( and were so needed as so many patients have fallen through the net of a dignified and spin free death)
      As the " Angel" knowing just what to do at the moment of your demise? Sadly that is just not true.....
      Most people DONT know how to act.
      They often just need a nurse to help enable them to cope in the way which may help

      You disagree with many blog comments and blog entries Ursula and to be honest , are never shy at saying so......so I am disagreeing with some of you and some of what yours say
      I'm sorry if that upsets you, but like you, if I feel strongly about a subject I will Voice my opinion

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    6. I am well used to you taking any of my comments in the worst possible way. For you to give me the benefit of the doubt is like stumbling across gold dust. It ain't going to happen.

      You found my "line insulting". May I suggest, as I said to my mother the other day (different context), that "it's not all about YOU". I wish I hadn't related what amounts to one of the most poignant moments of my life only for you to trample over it like so much nothing.

      Yes, John, you don't need to convince ME that you are a great nurse, that you have loads of wisdom to pass on to youngsters following in your footsteps. Try and pass onto yourself that even those you and your chums don't particularly like have feelings too.

      U

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    7. The point of the whole Blog entry was about balance....balancing objective experiance with clinical protocol so that the final offering is in some way a quality production.

      I found your remark insulting to nurses in general and not just to me.
      I have bucketloads of self awareness....and I'm not going to debate this subject any more but you need to realise that what you say has its own ramifications like ripples in a pond
      You just cannot say what the hell you like and not be challenged on it......

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    8. PS Your assertion "the Angel knowing just what to do at the moment of your demise? Sadly that is just not true....." takes my breath away. Who do you think you ARE, John?

      The Angel (my son) will know exactly what to do and what not to do. Better than any "expert" nurse. Though, no doubt, he'll leave the bedpan to you.

      With those words, John, you have disappointed me more than I'd ever imagined possible. Still, as, maybe, you know from experience, nothing let's you get over someone faster, and to the core, than when your vision is just that ... yours. Little to do with reality.

      U

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    9. Just read your last comment. Do you actually ever have it in your heart to admit that, maybe, just maybe, some of your replies, particularly the one to my first comment, are a bit heavy handed?

      The solution has just come to me:Maybe I should become your patient then I would experience all that you pride yourself on.

      In the meantime just out in the cold,

      U

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    10. No, I don't. You never pull your punches and when I know what I'm talking about nor do I.
      I took you to task on one comment. That doesn't detract from the validity of your others, and I am sad you have had a somewhat negative experience

      And to be honest Ursula if you were my patient...you would be very very well looked after

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    11. And good for the angel for knowing exactly what to do
      I hope he has an informed and supportive nurse to help him carry out his plan of action"
      Everyone deserves one

      Now end of discussion

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    12. I thought we banned Ursula? Why is she back?

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    13. You never learn despite being a teacher, do you John?

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    14. You told me so Thomas!

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    15. And I am sure you are delighted to remind me so

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  6. great advice and i'm sure she appreciated it.

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  7. Number 12!!! Yes! I detest euphemisms for death, they're woolly, don't help anyone and may actually confuse some and come across as unprofessional, in my opinion.

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  8. A cousin who did her nurse training in the old days used to say of university nurses that they knew everything about the neurological pathways through which a drug works, but didn't know how to get it from the phial into the syringe.

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  9. The hospice knew what they were doing when they employed you. When my neighbour's husband died recently (in hospital), the doctor in charge allowed his wife to take his beloved weimeraner in to see him. It meant a lot to them all and he was the first dog ever allowed in ITU.

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    1. I agree. When my mom was dying, the nurse was afraid of dogs and refused to allow mine in( mom requested them).. I wish I'd pushed it now

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    2. I've seen two dogs sneaked into ITU
      On spinal injuries we once had a horse brought to The until and pushed the patient outside on her bed

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  10. Anonymous4:19 pm

    I really hate reading here when you lash out at your readers. Ignoring some comments would be kinder. It's not necessary to put everyone in their place. Just saying ...

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    1. I disagreed with a comment which i found insulting in itself .

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    2. As for lashing out?
      That seldom happens
      Sorry if you were upset
      But im not sorry for what i said

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    3. Anonymous1:59 am

      John has not lashed out at anyone on this post... he is just dealing with the problem child, Ursula in a firm manner. I have read this blog for a long time before I started commenting and have seen how mean and thoughtless Ursula’s comments tend to be. John shows his kindness and compassion by allowing Ursula to comment, given she has no filter.

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  11. Thank you for the list. I have never been through this type of thing, and I can only imagine how difficult it is. I admire the people who do this for a living day in and day out. I know I couldn't do it.

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  12. You should be TEACHING. I hope she took notes. You're an amazing person!

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  13. It is good that young and old work together and can share knowledge. I am sure she will pass some enthusiasm on to you too as she is about to embark on a nursing career and she is not shirking at working some night shifts in a care home in the meantime. She sounds good.

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    1. I agree, she has an interesting and refreshing take on things

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    2. I sensed the good vibes between the two of you.

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    3. I liked her brightness

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  14. spot on, John..I remember when my late partner was dying and he sad that it was "just like being back at home"...family thought that was good...he meant them arguing...
    It isn't an easy job, and you do it well

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    1. Perhaps the arguing had its soothing effects too

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    2. for them , maybe...their normality...

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  15. Anonymous5:18 pm

    I am so so glad that you have got this new Hospice job to go to.
    Nothing more to add
    Tess x

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  16. Hi John, I’m a long time reader of your blog but have not commented before. Thank you for today’s post. As a fellow nurse, with many years of experience in the NHS and as a recently bereaved daughter I found your list both helpful and poignant, in fact it made me cry, but in a positive way. Passing this knowledge onwards to future nurses is so important and providing the support to families and loved ones going through this process is vital. I knew my mum was dying but it took a nurse to really help me believe it. She was so kind and so honest, I needed that. And even though I was experienced in caring for people at the end of their lives, it was completely different because she was my mum.
    Wishing you all the best for your new job, you sound like a great person to work with.

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    1. FB
      welcome to Going Gently
      What an apt title for a blog given today's subject.
      Thank you x

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  17. Excellent list. I cannot think of anything to add.
    Barb

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  18. I don't often comment John but feel drawn to on this occasions.As a PAM 's professional for 25+ years, recognising the value in your point making.Over the years I have been very much hands on in the teaching, mentoring and assessing of students clinically and have the experience of guiding those whose awareness of the clinical setting blossomed into slick, integrative care whilst those less so needed a wee push and shuve in that direction, some are better able to see the wholistic care scene than others, some are more interested than others, we can but hope we influence as many newcomer carers as positively as we can. We leave a powerful legacy regards practical patient care which is valuable, moving forward. Enjoy your summer, hwyl Suz x

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    1. I understand through my friend who works in nurse education, the the curriculum is changing and she is worried regarding the gap between learning and practice

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    2. Understood. As a couple who have 60+ years between us in clinical and academic ( husband's as lecturer post clinical) we've had lively discussion this eve based on ur post. In short concensus is that school based learning underpins clinical. As it was in both our initial learning. But,the quality of clinical very much depending on the practitioner and the student. I have very much enjoyed reading your evaluation in practise today John, as it gives me added hope for our future NHS.x hwyl Suz. ps the hospice will be the richer for your experience, caringness and presence.

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    3. U can praise the intensive care unit at Glan Clwyd hospital too
      The hospital in wales gets a bad press sometimes but the care of the patients on intensive care is second to non

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    4. Glad to hear it, if we ever move back from s scotland then i am heartened by your words. The press are often harsh and ill informed as so many are.

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  19. I found your comments so interesting Johnas my darling farmer had 'end of life care' when I lost him to a glioblastoma two years ago. He was in a private room and was always asleep when I visited, nothing in the way of care visible apart from a urine catheter and an oxygen mask. He was always clean, the bed was clean and tidy and he was peaceful. It was as though he just drifted away. His end could have been so much worse.

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  20. I was so grateful for the competent and compassionate end-of-life care my father received. The nurses and personal care workers seem to have had a similar list to yours. The only thing I regret is not talking to my dad after he was no longer conscious. I knew I would start crying and not be able to stop, and thought if he truly could still hear me it would just upset him. So I just sat with him. And talked to him after he died instead.

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    1. I have laid a patient outwith his wife who chatted to him throughout. She only left when it was time for us to cover his face

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  21. Really good list, lots of lessons learned over the years. A couple of the points rang true for me, my mother lived much longer than anyone expected - death can be unpredictable. Anger and grief can happen at the same time, experienced unexpected family stress when both of my parents died.

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  22. My dad passed away June 8. My mom was with him in the hospital and then the hospice; it was mercifully very quick. But everyone who was with them was unbelievably kind, she said. And that made me feel better; we are far away, and he was gone before I could get there. He was an extraordinary man in many ways but he was so very kind. It was fitting that he was treated in such a way as he left this world.

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    1. My first experience with death as a nurse,was when a woman with no family and friends died in psychiatric hospital. The sister taught me to be respectful for a life lived

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  23. Sarah Jones9:10 pm

    I wish you'd been my Dad's nurse when he died in Sheffield hospital 17 years ago. My Mum overhead the nurses discussing the fact it had been too late to transfer him for further treatment at another hospital for his heart and he was dying!! I had to break the news that he wasn't going to get better to my Sister before she arrived on the ward as my Dad didn't know, (my Mum's decision). I was standing in the foyer and would you believe a very kind auxillary lady found us a room for a bit of privacy whole I told her and we had a good cry xx

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    1. Sarah
      In some ways Ursula was fight when she recounted a bad experience
      There will always be many bad experiences , because there will always be a few bad nurses, or nurses who are unthinking, or nurses who are having a bad day c

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    2. This comment has been removed by a blog administrator.

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    3. Sarah Jones8:30 pm

      I didn't see Ursula's comment, but quite so John x

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  24. The nursing team that supported us during our 10 day vigil while our lovely Mum was dying were incredibly professional but also very caring, towards all of us. Five of us were sleeping in shifts in the family room, keeping watch over her, talking to her and even doing some laughing as we remembered good times together. After Mum had died several of the nursing team came into her room, sat with us, and shed a tear with us too. We couldn't have done it without them.

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  25. Dead bodies never look like you think they're going to, they go gray very fast.

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  26. When each of my Parents were dying, the Hospice Nurses were exemplary, both to them and to us, the Family and Friends. Though death be a very natural process we all must go thru, I would think you never quite get used to being in the very presence of it? Vigils are rough.

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  27. That young nurse to be should consider herself very very fortunate that you gave her "nurse rules", I am sure she will be ever grateful. You are a good person, and from what I have read a compassionate and very competent nurse; who wouldn't want to learn from your experience... it is worth it's weight.

    Jo in Auckland

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  28. I remember being that young and knowing nothing about death and suffering. I did a paper on the code blue and about how patients die. Seems like such a long time ago. I'm glad she's got you to guide her.

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  29. I'm curious about your comment regarding facilitating visits at 2am and I guess your choice of 2am is for the purpose of illustration but do people really visit at odd and unsociable times?

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    1. I think visiting should be 24/7 on intensive care

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  30. We had hospice care at home for both my husband and my mother. I was their sole caregiver in both cases, but I couldn't have done it without hospice staff support. Support during and after. Two of the hospice nurses even came to my husband's funeral. We had a longer than usual connection with them as he was on hospice over 7 months.

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  31. What are traveler families?

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  32. Large extended families often based in irekabd who travel uk in caravans

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  33. We were told my dad wouldn't last another day and decided it best not to tell dad. The nurses were fantastic, but the doctor... burst noisily into the room dressed in vibrant orange shirt, trailing a group of trainees with him. It was like the carnival had arrived at the death bed. He then proceeded to repeat loudly that dad was dying. Dad heard. I have never really forgiven that doc for causing my dad that last distress.

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    1. I hate unthinking moments like these . So sorry It happened x

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  34. John, That was a brilliant post and very moving. The hospice is lucky to get you and I am certain you will be the right person in the right place.

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  35. Excellent, helpful, and well-intended advice despite the comments made by one reader who seems to have missed the point. It’s wonderful to have the luxury of a mentor to support and guide early in one’s career. Your years of experience have served you and others well. And your willingness to admit what you don’t know and need to learn over the years. Thanks again for what you do! I know from personal experience that not all nurses are great at what they do. But the ones who are make a huge difference. Sending you a grateful cyber hug.

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    1. And I take it ...big hug..we need to meet up xxx

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  36. Anonymous1:53 pm

    Ursula, you obviously have a lot of opinions and a good deal to say. Have you considered restarting your blog instead of stalking other peoples comments sections? Kind regards Poppy

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  37. This post shows exactly why you got this job. I think you will bring something very special to our local hospice, as well as years of experience.

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  38. The things they don’t teach in the classroom but are important. Way to go John.

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  39. You will be a valuable asset to your hospice, John. Thank you for posting this. My Dad passed away in his own home (he had 'Hospice at Home' care) and I chatted away to him right to his last breath. I hope he heard me.

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  40. Love your blog,John.Not commented before but this post exudes compassion and common sense.I was lucky enough to experience just this care when my Mum died. The local hospital (NHS no less) provide Mum a private room and me with a bed beside her for 3 long precious weeks.I played her favourite music on tablet...it always soothed her through out her dementia. You will be an asset to your new job.

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  41. Dear John, this is a beautiful list. the thing i most appreciated about my husbands hospice nurse was that she was straightforward with us. no skirting issues or pretending things were anything but what they were. i could go on and on about dear clara. but i think you will be an amazing hospice nurse. x

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