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OPINION EXTRA

'Personalised care at the end of life ensured my dad had a good death'

  • 3 Comments

This article is a story that my lovely dad “Tony” wanted told about living and ultimately dying with cancer.

About who and what helped our family to cope and to say thank you.  It is sets out some thoughts that might help other people, both the carers and the cared for.

Much has been discussed recently about words that are used in describing cancer and the people affected by cancer. For example, The “enemy”, “battle”, “bravery”, “suffering”. I think of cancer as a thief – it steals (either temporarily or progressively) your health, your wellbeing being, your independence, your space and, for some people, ultimately your life.

 

The beginning

In September 2012 my father was diagnosed with an aggressive locally spread prostate cancer and in March 2014 he died. He was four months short of his 80 birthday and before this diagnosis had never been ill in his life. He was diagnosed PSA 25 and Gleeson score 9/10. At Christmas 2012 after hormone treatment his PSA was five. That was the last good news. After this, despite the best knowledge and efforts of his clinical team and the use of all treatments available, his cancer was not controlled and he developed and died with metastatic prostate cancer.

Palliative Care: living as well as possible until the end of life

I have described cancer as a thief and it is but it cannot steal love or memories. Throughout his illness my father expressed the wish to stay and to die in the home that he loved.  When it became clear that no more treatment was possible it was vital to us as a family to do everything we could to make that happen and to spend that time living with love and sharing and building memories. My father remained relatively well until the new year 2014. We had some short family holidays and had a lovely family Christmas.

From new year it was clear that we were in the final months or weeks of my dad’s life. His GP described our family and the whole range of people who supported us as “team Tony”. We were and Tony was the key player.

I cannot remember a single person who didn’t introduce themselves with “hello my name is”

We met some fantastic people – clinical and non-clinical – who provided support with competence and kindness. I cannot remember a single person who didn’t introduce themselves with “hello my name is”. I can remember busy people who spent the extra five minutes, the equipment service drivers who made sure things were arranged exactly how my parents wanted them, the respiratory nurse specialist who had a great discussion with my dad about the relatively merits of various Scotch whiskies, the occupational therapist who focused on what was possible, not what was no longer possible, and our GP who provided continuity of care, who was available to speak to or visit whenever needed.

He loved to tell stories and was bored with “ill stories”

There were funny times too. About a week before he died my dad really wanted a shower. Quick mental risk assessment – yes we can do this. In a small bathroom, we had one patient, two helpers, a walking frame, a seat, and a toilet frame. The shower was managed and I asked my brother to get the clothes – he couldn’t we had jammed ourselves against the door. Cue three people helpless with laughter! My dad later told the story to a visiting friend as “we had 18 legs in our bathroom”. Another lesson – he loved to tell stories and was bored with “ill stories” he really valued half an hour of “being himself”. He was determined to get into his garden. He did one last time with oxygen in tow. He donned his gardening cap and secateurs – it is my last photograph – one of determination and triumph.

Some reflections and lessons

I have reflected a lot on what made it possible for my dad to die at home and what is was like to have two roles as daughter and nurse.  Some of these reflections are set below and healthcare professionals might like to consider them in planning and providing care.

It was very important to my father to be a responsible and engaged patient. He kept detailed records of appointments and treatments and entered the Stampede clinical trial.  Every health professional we met treated him as such, explaining options openly and honestly and respecting decisions, which is so important for maintaining dignity, self-respect and as much independence as possible.

Specialist nurses provided invaluable expertise and support

The cancer triage service available for advice 24 hours a day, which enables direct urgent attendance and admission, avoiding A&E, was a really important resource and part of the local cancer service offer.

Specialist nurses provided invaluable expertise and support. At diagnosis, a specialist nurse confirmed the “bad news” and explained what next in a quiet unrushed environment before we saw the oncologist. The respiratory nurse specialist helped with managing distressing breathlessness and the end-of-life specialist nurse provided information, emotional support and confidence to my father and our family that we would be able to cope and, if for any reason more help was needed, that the hospice would provide that support at home or in the hospice itself.

Anticipatory care is vital. We had the equipment, the medication, the contacts numbers for help 24 hours a day, an excellent local cancer triage service and primary health care team. When I look back I was in my nurse role and I did do a lot of the anticipating – “I think we should get a profiling bed now”, “Dad, I know you are reluctant but I think you should consider a walking frame”. My brother has said since – it was fine for us because I was there and I know the how things should work – the what and the how. For other families, knowing whom the person is who will “anticipate and arrange” is critical.

It is not always the question you expect that is hard to answer. I was ready for the big question. The question that began as “how long do they think I have got left?” and ended with “how much longer will this last?” I wasn’t ready for: “Do you think I will ever drive my car again?” I answered that it was unlikely but you never know and cried when he said “that is my last bit of independence gone”.

I wasn’t ready for: “Do you think I will ever drive my car again?”

The do not attempt cardiopulmonary resuscitation( DNACPR) discussion is necessary and getting it right it is so important. There is one chance to get it right. Families will remember and need to know exactly what the decision does and doesn’t mean. The GP explained to us that CPR would be extremely unlikely to be successful, exactly why it was necessary to record my father’s wishes and that all other treatment needed would be given. It was signed and stored in a capsule in the fridge. We didn’t need to call an emergency service but, if we had, it gave us the confidence that we didn’t need to explain what my dad did and didn’t want.

It is really important to make sure that everyone understands the kind of symptoms that may present and how they will be managed. And to give people a drug chart – we had bd, tds, qds, prn and no chart – we made one!

It is not always easy to be both daughter and nurse. Many kind colleagues told me to make sure I didn’t become so much the nurse that I forgot to do the important daughter things, the things that bring short-term laughter and long-term memories. The photos, the stories, the making sure that the people he wanted to see could come and share old times and nice food.  It was made much easier by the GP who had the balance exactly right in my nurse/daughter roles especially towards the end. She always listened to my observations, she always discussed things with me about my dad’s care, but never made me feel I had to take more responsibility than as a daughter. It is as hard to be a mother. One of the hardest things I had to do was contact my children who live abroad to say it is time to come home to say goodbye.

It is not always easy to be both daughter and nurse

What could have been better was communication, which could have been quicker and sharing of information/records. Telling the same story many times is hard work and wasteful of personal and professional time.  I think that the otherwise excellent oncology service kept my father as a monthly follow-up patient a bit too long. My dad was that responsible patient who wanted to do it right, including struggling to get to outpatients clinics when he was really too ill and when there was nothing further to be done.  In the end we said enough.

I learnt a lot about how much courage it takes for families to make it possible for a death at home. My mother didn’t know if she could do it, but she was amazing.

My mother didn’t know if she could do it, but she was amazing

As a nurse, I found that I knew how to do things without even thinking, that I knew how to help how to plan an episode of care and how to relieve symptoms as they presented. For my family this was the first time they has experienced these things and giving families the confidence that they are doing everything right is vital. We have come to accept that hospitals provide the best expertise and are safe places. As we try to give more people the death at home that they want, we need to tell a different story about how the home can be the safe and best place.

At the end

My dad was nursed in a room by the garden and by the living room.  He could hear us all the time and we could include him or draw a “temporary curtain” for privacy.  He was very poorly on a Monday night and he had a syringe driver in place and could just manage ice chips. Our family were all there and he asked what was going on. I said we were all together and he smiled and asked what my brother was drinking. On hearing G&T he managed a teaspoon of his favourite tipple. 

I said we were all together and he smiled and asked what my brother was drinking

We stayed with him through the night and mother woke up with a strong feeling she wanted to be him. In the morning as I began to wash his face he sighed twice and died. A good death.

Thank you

It is impossible to thank everybody who tried so hard to control my dad’s cancer and then worked so hard to support us to give him the peaceful death at home that he wanted. Our gratitude for the skill and kindness with which everyone cared is beyond words.

 

Viv Bennett is director of nursing at the Department of Health and Public Health England

  • 3 Comments

Readers' comments (3)

  • michael stone

    In so far as any death 'can go well', this one seemed to - and it seems everyone was fitting in with Viv's dad's choices, which is definitely the place to start.

    As for:

    'What could have been better was communication, which could have been quicker and sharing of information/records.'

    I keep banging on, about the complications of 'communication and the communication chain' for end-of-life at home, but the primacy of 'communication' hasn't yet really become embedded.

    You can't solve the complications of the communication chain, for EoL at home, by being led by 'records': you really do need to accept that the people who are closest to the patient (the family, to use a quick term) are absolutely central to solving this problem of 'communication'. To be more specific, what is central is a switch in professional attitude from 'we can distrust the relatives' to 'the relatives were there, we were not, so unless there is some strong evidence of wrongdoing, we must beleive what the relatives are telling us'.

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  • michael stone | 5-Nov-2014 10:31 am

    good idea if you could learn to communicate by taking your comments to a popular mag. on your specialist subject if you actually have one which you have told readers is chemicals
    (of the explosive kind would be good)!

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  • michael stone

    Anonymous | 5-Nov-2014 11:21 am

    Interesting that this piece appeared (although I only came across it yesterday) on Oct 28, and until I commented on Nov 4 nobody had commented: then you comment on my comment, almost immediately.

    And the non-clinical aspects of end-of-life is currently 'my specialist subject', not chemistry: I said that my degrees are in chemistry, not that it is my 'specialist subject' at the moment.

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