No one can take away the pain caused by the death of a close relative, but as a society we have a responsibility to ensure that providing the care for a palliative patient in their own home does not endure the helplessness expressed in Kathryn Price’s letter (Time to talk honestly about end-of-life care, 25 January).
As a community nurse working in the NHS for over 30 years, I have seen examples of what could be considered a “good death” of a patient in their own home. Such a death requires joined-up working by experienced staff, skilled nurse prescribers, trained and properly resourced community services, responsive community equipment suppliers and good standards of social/personal care support.
Sadly, as an experienced nurse, I have also spent hours struggling with the bureaucracy of getting this joined-up care, the frustrations of joint working and the difficulties of providing adequate care support. In recent years the complexities of this have worsened because of the involvement of multiple providers (with their own limitations) providing this care. This has primarily been the result of the NHS and Community Care Act and the involvement of “any qualified provider” in service delivery.
Consequently, all this can have an impact on the care provided, but also on the wellbeing of the community staff trying to manage and provide this care at the coalface. I agree it is time to talk honestly about end-of-life care, but providing this care can and should be possible with proper resources and the right attitude and commitment.
Name and address supplied
• Kathryn Price’s letter sadly states the problem people have in getting the support to allow loved ones to die at home. My husband, to whom I had been married for 71 years, this month died at home at the age of 92 surrounded by his loving family. This was all due to our caring and knowledgeable GP, who brought into action the rapid response team supplied by NHS to care for patients at end of life. This gave us a hospital bed, two carers three times a day and a night carer (who were all professional and caring), all at no cost as this was a medical necessity. All our loving family were able to spend time with him and cannot speak highly enough of this marvellous support, which gave me the opportunity to succeed in achieving my husband dying at home, which I so wanted. I am lucky enough to live in North Devon. Is this not available countrywide? We certainly must continue these important discussions.
• I was interested to read the letter by Kathryn Price since my husband recently died at home. He suffered from COPD (chronic obstructive pulmonary disease) and had become very breathless. One night there was a crisis and we called 111. A nurse practitioner came during the night and was able to give him diamorphine. The following day the NHS care kicked in. A community matron visited and arranged twice-daily care by a nursing team called the virtual ward who were caring, professional and respectful.
An occupational therapist visited and ordered many pieces of equipment to make him as comfortable as possible. He had already been prescribed oxygen at home. Due to the wonderful care provided he was able to be with his family and me until he died peacefully in his own bed. Sadly we discovered later that these services are not universal but depend on commissioning by the local doctors. I am very grateful to them for this provision.
• I read Kathryn Price’s letter with deep sympathy. I am 63 and I have metastatic breast cancer in my lungs, brain and bones. For seven years, my family and I have lived with a “few months to live” diagnosis.
I am so grateful for our NHS and St Catherine’s hospice in Preston, where I receive palliative care. I continue to receive chemotherapy and radiotherapy so am able to make the most of the life left to me.
Several years ago, with my palliative doctor, my family and I worked out an end-of-life plan, detailing what I would like for my care in my last months, weeks and days. The hospice staff and volunteers are excellent but it is largely funded on voluntary contributions. It would be wonderful if more people could be helped. This can only happen if proper funding is made available. Charitable giving is wonderful, but it cannot make up for budget cuts. Perhaps some of the promised £350m could reach the hospices.
Rev Jan Pillinger
• In 2007, my dad died in hospital from the effects of vascular dementia. In 2009, my father-in-law died from secondary neck cancer in his local hospice. In 2012, my mother-in-law died from lung cancer at home. Each experience was a steep learning curve for me and my family.
Since then, my aim in life has been to learn more about living well in the last phase of life and to encourage talking about our preferences in the last months of life, including writing down our wishes and supporting those who are caring for a loved one as they approach the end of their life. I have volunteered and worked in many non-medical roles associated with these aims.
My experiences and learning led me to write and self-publish a book called Moments of Meaning: Living Life Whilst Facing Death. I also have a website – jillcox.co.uk – where I blog about all manner of things associated with caring for a loved one living with a life-limiting illness as they approach the end of their life. The aim of the book and website is to give the reader relevant stories of those experiences I and others have had, pertinent information to inform discussions and further sources of information. It’s hopefully a gentle introduction to this most difficult subject and easy to read.
The book is written from a non-medical perspective but has been checked by palliative care experts. As every experience of dying is different, I don’t claim to be an expert myself. However, with every experience I have, I know I’m learning more so that when I reach the last phase of my life, I’ll be able to make decisions and ask for relevant support. In the meantime, I’ll continue to support those I work and volunteer with to do the same. The point has been made many times that if we prepare for our end of life in the same way we prepare for the beginning of a new life (birth planning), we would know more, ask more and have more control over the things that matter most to us at this point.
• Like Kathryn Price, my husband and I were deeply moved by Rachel Clarke’s article (All that is good in human nature is here, Review, 18 January) regarding end-of-life care.
In December 2013 our son Luke died aged 28 years from an aggressive and rare form of bowel cancer only five weeks following diagnosis. He was a kind, funny, gregarious young man, loved by many. And seemingly fit with several marathons under his belt. Until he developed what appeared to be flu symptoms, which he just couldn’t shake off. He soon became too weak to work and returned to the family home to recuperate. Within days his cancer was diagnosed and Luke was told it was beyond cure, its spread too advanced for any treatment. The young consultant struggled with words and when Luke asked: “Are you telling me I’m going to die?” The support nurse began to cry, the answer too difficult for any of us to bear.
In the main Luke received very good care from the local NHS hospital and hospice at home support. When he required a period of readmission, there was a frightening and noisy night in an overcrowded and understaffed A&E critical care ward. But he was subsequently moved to an oncology ward where there was calm, empathetic care. Nurses in particular were exemplary in their humanity, prepared to bend the rules to allow the family to be together at all times. They made up two bed chairs in his room and utilised three beds in the oncology day treatment room overnight for his siblings.
It was Luke’s desire to return home and, although fearful of what was to come, it was ours too. Having regulated his pain relief, the hospital team liaised with home support services and arranged for a hospital bed and various aids to be delivered to our home within a couple of days. Being home enabled Luke to take some control of his final weeks, spending precious time living together with his immediate family. His friends called by, bringing laughter and a sense of life outside of his illness. Nothing can ever be perfect under such circumstances. We were living with the unthinkable in a surreal bubble. Together with Luke in the knowledge, yet shock and disbelief, that he was dying. There were terrifying moments of panic and despair, but also peace and immense tenderness. Memories we will treasure for ever. In Luke’s final hours, palliative care nurses were able to provide medical assistance yet step back to allow us privacy, for which we are grateful.
With his two older sisters, twin brother and their partners, Luke made up our whole. He’ll never know the joy of his two nieces and they the joy of him. Each of our lives has changed for ever, the depth of our love so great, the depth of our loss unfathomable. But that’s another letter. Articles in the Guardian such as those by Rob Delaney (Journal, 5 December) and Thomas Harding (Weekend, 18 January) about living with their loss mean so much.
There does need to be more openness and conversations about dying and grief. A time, as Rachel Clarke eloquently explains, to have “people, not diseases, at its heart”.
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