This is a blog my Dad wanted me to write to say thank you and to offer some thoughts that might help others.
In Sept 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 80th 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 5. 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. Throughout his illness my father expressed the wish to stay, and to die, in the home that he loved.
Some reflections and lessons
I have reflected a lot on what made it possible for my father to die at home and what is was like to have two roles as daughter and nurse. Some of these reflections are set out below and health care practitioners (HCPs) might like to consider them in planning and providing care.
In the final months or weeks of my father’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.
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…’#hello my name is’ and I can remember busy people who spent the extra 5 minutes to make sure care was truly personal.
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 care professional we met treated him as such, explaining options openly and honestly and respecting decisions….so important for maintaining dignity, self respect and as much independence as is possible.
The cancer triage service, available for advice 24 hours a day and enabling 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, un-rushed 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 you were there and you know what and how.' For other families, knowing who 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 the question, ‘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’.
The DNACPR discussion is necessary and getting it right is so important. There is one chance to get it right and 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.
What could have been better? Sometimes communication could have been quicker and sharing of information/records better…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 father was that responsible patient who wanted to do it right, including struggling to get to OP 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….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 have 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 our 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 home can be the safe and best place.
At the end
At the very end we stayed with my dad through the night and my mother woke up with a strong feeling she wanted to be with 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
11 comments
Comment by Penny Hosie posted on
Lovely and heartfelt blog, Viv. My uncle recently died from the same illness as your dad - and at home. A 'good death' like theirs is entirely possible with the support of good health care professionals and knowledge of the care needed and, indeed, available. Writing this from both a personal and professional perspective must have been difficult but I'm sure many people will benefit from your advice and your dad's experience.
Comment by Mary Kelly - Burnham on Sea posted on
How brave of a daughter to write this and be willing to share it. Nurse or not.
So very many people can benefit from your words and hopefully gain inspiration. xx
Comment by Shelagh Creegan posted on
Thank you for sharing your story and enabling me to compare and contrast with my own story about my father's untimely death from bowel cancer in 1995 in https://bigirlsdocry.wordpress.com/2014/10/06/part-5-funny-times/
Comment by Sally Brown posted on
Viv, a lovely blog which rings true in so many ways, both my husband and I nursed a relative to a good death at home with family present, we would not have had it any other way. We too had good support from the MDT to enable this to happen.
This must have been difficult to write but am sure brings comfort to you and your family in sharing your experiences.
Best wishes and thoughts with you.
Comment by Ruth Auton posted on
Thank you for sharing this Viv. We owe so much to our parents: you made such a difference to your Dad and your family's experience. All families should have someone special to help them at this time.
Comment by Jenny Kay posted on
Viv, what a star you are for putting all of this into words so elegantly, professionally - and movingly. As someone who is currently balancing the 'nurse/daughter' role with elderly parents your experience strikes so many chords. - as it will with so many colleagues. I have been so impressed by the GPs and community based staff - my parents are not yet 'end of life' but good to hear about the support available at that stage. Best wishes, Jenny Kay
Comment by Ruth Ashmore posted on
I often think that we are the squeezed generation of woman still being mothers but also now having to care for parents and older relatives with increasingly more complex aliments of old age, who we love and cherish. Its easy for colleagues in the health and social care world to forget that we don't switch off the caring gene when we go home and that sometimes we need a friendly reminder that we need to look after ourselves. Thank you for this blog I always think about the care I would expect for my parents and very proud of the NHS and its family of care and support.
Comment by Frieda Rimmer posted on
Thank you for this and your willingness and perhaps also need to put this down in words. I also a journey where at some point my husband who has both Parkinson's and cancer may need me to be both wife and nurse. Getting the balance right won't be easy but blogs such as yours will ease the sense of isolation such circumstances can bring. We need to talk and share more, we know this, but it isn't always easy.
Comment by Eleanor Levy posted on
Thanks you so much. I had similar experiences with my father, who was suffering from multiple conditions and a long process of progressive debility. This had a huge impact but we much appreciated the hard work of professionals especially those delivering social care, to support us in our efforts to ensure that his intermediate and end of life care was in accordance with his wishes and was considerate of family members. This was somewhat in contrast with my mother's death in hospital, which was not what she wanted and left questions about the care she received
Comment by Janice Tausig posted on
And thank you Viv - I am working on EOLC with a couple of organisation and this put everything into perspective. I will resend it whenever I think it is helpful - and that could be many times!!
Comment by Sue Hogston posted on
Thank you Viv, what you describe is wonderful and what should be achievable for all who want to die at home, surrounded by those they love with dignity, and with care which deals with the present and anticipates the future