How can we prepare for a ‘good death’?

Carlo Leget is Professor in Care Ethics and Endowed Professor of Spiritual and Ethical Questions in Palliative Care at the University of Humanistic Studies in Utrecht, Netherlands. His book Art of Living, Art of Dying is a contemporary guide for discussing end of life and existential questions. Here, he considers end of life issues in a hospice context and reflects on the importance of a model for enabling a ‘good death.’ 

Some twenty years ago I entered the world of patients who are dying and their families. Until that time I had been studying theology, trying to find the meaning of life in conversation with the great minds of Western thought. I wrote a PhD thesis on the relation between life on earth and ‘life’ after death in the theology of Thomas Aquinas, and hoped to continue my work by building a bridge between the ancient wisdom of the Church and problems in contemporary health care.

The higher one’s ambitions are, the more one risks to lose. During my participatory observation as an auxiliary nurse, caring for dying patients and their families, I virtually did not find a single point of connection between my ambitions and everyday reality. The people who were cared for and died in the nursing homes I worked in, were hardly thinking about life after death. Even ethical issues about autonomy, non-maleficence and benevolence I had read so much about and which might work as a point of departure did not seem to play any role at all.

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How can we attune to the spiritual and religious needs of young people in hospice contexts?

Reverend Kathryn Darby is the Chaplain at Birmingham Children’s Hospital and co-author with Paul Nash and Sally Nash of Spiritual Care with Sick Children and Young People.

In this blog, she explores the roles chaplains play for sick children and young people who are staying in hospices or hospitals. 

How can we attune to the spiritual and religious needs of children and young people in a hospital or hospice context? This question was recently sharpened for me in my role as a chaplain at the Birmingham Children’s Hospital when in conversation with a young person receiving treatment for mental health. He said words to the effect of, “You just get into that headspace where you don’t matter, you don’t deserve anything”. The need for all of us to attend to our mental health has been highlighted in British society recently – e.g. the grieving and recovery process of Princes William and Harry in relation to their mother’s death and debate within the political arena about mental health provisionNo one is invulnerable to the stresses and bruising of life that can result from illness, bereavement, or loss.  At times, mental health issues, such as anxiety, low mood, or eating disorders can escalate for young people leading to hospital care. Young people and their families experience distress, suffering and heartache but can find the support that they need for recovery and growth. Continue reading

Rethinking hospice chaplaincy: A spiritually motivated response to raw human need

Reverend Dr Steve Nolan is the chaplain at Princess Alice Hospice in Esher and the author of ‘Spiritual Care at the End of Life.

Here, he explores new ways of understanding the roles of hospice chaplains. 

I never met Dame Cicely Saunders. The nearest I came to her was when I visited the chaplain at St Christopher’s, the south London hospice she established. My tour of the hospice had reached the old chapel, and as I chatted with the chaplain, I caught a glimpse of her as she walked slowly passed the chapel door.

Whether Dame Cicely should be considered ‘the founder’ of modern hospice care could be debated. But her dynamism and drive had a significant hand in shaping the direction and values of the nascent movement. Yet she was not the only dynamic woman to have influenced the history of hospice care.

In 1843, Mme Jeanne Garnier opened a home for the dying in Lyon. In Dublin, Sister Mary Augustine inspired first Our Lady’s Hospice for the Dying, which opened in 1879, then further hospices in Australia and Great Britain. And in New York, Mother Alphonsa established St Rose’s Home in 1899. Working independently of each other, these women shared not only a common purpose but a motivation that was inspired by their spiritual beliefs.

Spirituality was clearly one of the key motivators that drove Dame Cicely. In the late 1940s, she converted from agnosticism to a deep evangelical Christian faith, which transformed the way she understood her work. Caring for the sick had always been a priority; following her conversion it became a religious calling.

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“Getting over it” – Processing grief in a way that works for you

Gone in the Morning: A Writer's Journey of Bereavement

An extract from chapter 1 of Gone in the Morning: A Writer’s Journey of Bereavement by Geoff Mead.

Recently, I was having a beer with a friend. He asked me what I was writing these days and I told him that I’d written a memoir about the last 18 months of Chris’s life, about 150 blogs and a bunch of poems, mostly about grief. He gave me a quizzical look and asked a pointed question: “You are getting over this thing, aren’t you?”

“I’m not trying to get over it,” I replied. “I’m trying to get through it.”

He took in my reply but said nothing.

“Writing seems to help,” I added.

“Really?” he said, and changed the subject.

It was a fair challenge, and not meant unkindly. I’ve been thinking about it, off and on, ever since. Why had I been so adamant about not wanting to get over Chris’s death? What had I meant when I said that I was trying to get through it? Continue reading

Parting Gifts – Geoff Mead reflects on the value of palliative care for a loved one

Anyone who has been bereaved through chronic illness will know that anticipating the death of a loved one prefigures the grief that is to come. We feel the loss even before it has occurred but try to contain it somehow for the sake of the one who is dying as we try to wring every last moment out of what time remains. Yet, in the midst of medical procedures and the comings and goings of friends, nurses and carers, it can be hard to sustain the one relationship that we most care about.

My wife Chris Seeley died aged 48, from the effects of a brain tumour on 3rd December 2014. With the support of the Penny Brohn Centre and Cotswold Hospice at Home, I looked after her at home for the last seven weeks of her life. Despite her physical infirmity, she wanted to sleep in her own bed; to be surrounded by her own paintings and furniture; to make art; to eat well; to be convivial; to be in nature; and to be expansive until the moment she died.

Chris Seeley, Geoff’s late wife

Continuing to do as many of the things she loved as we could manage was hugely important to Chris and it comforted me to know that I was doing my best to make it possible. Some things were easy to arrange and others – especially those which involved leaving the house – took a great deal of effort to accomplish. Now she has gone, I look back on these memories like wild strawberries, all the sweeter because they were the last of the season.

We discovered that friends were delighted to be asked to help with expeditions, domestic chores, cooking, making art and occasionally providing a night’s respite for me. It’s almost impossible to over-estimate how exhausting it is to care for someone round the clock and it was wonderful for Chris and I to have the opportunity to stay at Penny Brohn together for a few days, just two weeks before she died. We both knew that she didn’t have long and we had been struggling to talk about it.

On the last day of our stay, we sat holding hands in adjoining armchairs, wrapped in blankets, with the lights dimmed as we listened to the sublime tones of the Benedictus from Karl Jenkins’ Mass for Peace. It wasn’t yet time to say goodbye but deeply stirred by the music, we both wept for the cutting short of her life and the grief that was to come.

It’s hard to be with someone you love when they are dying. But it is also a privilege: an opportunity to say and do what is needed to prepare for the moment of separation; a chance to resolve matters and find peace in each other’s arms; a lesson in the harsh beauty of love.

Each person’s encounter with loss and bereavement is unique and I wouldn’t presume to tell anyone else what to do, but looking back on the experience of losing Chris, I see just how important it is to get support for yourself when looking after someone else. I’ll always be hugely grateful for the opportunity that hospice and palliative care gave us to come together before we had to part.

Geoff Mead is the author of Gone in the Morning: A Writer’s Journey of Bereavement

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Chaplains are worthwhile because….

Karen Murphy has worked in hospice chaplaincy for twenty years and has represented chaplaincy at national and international level. She is President of the Association of Hospice and Palliative Care Chaplains (AHPCC). Here, she argues the case for hospice chaplains. 

The Association of Hospice and Palliative Chaplains held our annual conference in May and considered the following statement: ‘chaplains are worth having because….’ As a group of skilled, trained and experienced chaplains, we had no problem in accounting for our role and purpose in a palliative care setting. There is a view, however, that in these secular days, the role of the chaplain is no longer valid or necessary. The daily conversations that chaplains share with patients and families soon render this argument redundant.

A patient shared with me recently that she had never had a religious faith, although she often thought it would be of value. Her long held view was ‘when you are gone, you are gone’. Now, facing her mortality having being diagnosed with terminal cancer, her thinking has shifted and for the first time, she is considering her life against an absence of faith. Our conversations are not concerned with my attempts to convert her to my way of thinking or persuade her to find a faith or belief, but to support her in this deeply challenging time. I can enable her to think through her questions and listen. At this point the value of chaplaincy becomes clearer as we offer spiritual listening, which is very different to counselling or social work listening. Chaplains have the capacity to instigate and support conversations that get to the root of someone’s spiritual distress and need. We are not afraid to ask the difficult questions about life’s meaning and purpose, and in my experience, patients seek out those with a belief in order to make sense of the spiritual disturbance and trauma experienced. A patient’s relative expressed this very clearly in a recent conversation, saying: ‘My mother, in her last weeks of life, wasn’t concerned with whether or not the chemotherapy had been successful, or what drugs she would need to be pain free. She trusted the doctors for this. What she valued was the time of the chaplain to help her think about life’s meaning and how to live and die well’.

There is a view that chaplaincy services are a waste of time and resources in a stretched and under –funded health service. The rationale for this view suggests that if patients identify spiritual need, they are likely to have religious faith, therefore will have the support of a local faith community. This view ignores the fact that patients faced with a terminal prognosis, while describing themselves as non-religious, will experience spiritual distress which is unfamiliar and frightening. Chaplains are an essential tool of our health care services which provide distinctive and relevant care for patients who are asking the big questions of life which have never been asked before. The positive impact of chaplaincy based on evidence and research is already emerging, with projects demonstrating the need for fewer GP appointments, reduced medication and a greater sense of well-being to live in the face of impending death. This body of research is growing and will offer to those cynical of chaplaincy, a quantitative and qualitative foundation for the chaplain’s continuing contribution to palliative care services.

For more information on Chaplaincy in Hospice and Palliative Care and to buy a copy of the book, follow this link

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6 Top tips on how to facilitate good interaction with older adults

top-tips-facilitate-good-interaction-older-adults

Robin Dynes, author of ‘Positive Communication: Activities to reduce isolation and improve the wellbeing of older adults’ provides some tips you can use to help facilitate good interaction with older adults and create a friendly environment

 

  1. Take any health and cultural issues into account

Age related health problems such as the onset of dementia, hearing loss, speech problems and the effects of medications can complicate understanding and the ability to communicate. Be aware of any difficulties individuals may have and take these into account. Make adjustments to any activities to allow for different mental and physical abilities. Even in today’s enlightened age many older adults, and, indeed, young people, have difficulty reading and writing. Find out all you can about the person you are supporting and adjust your communication methods to suit. This includes learning about their cultural background and what is or is not acceptable to them when communicating. For example, in some cultures it is disrespectful for younger people to make direct eye contact with an older person. In this instance it may be prudent to sit slightly to one side, keeping your eyes lowered but so the person can see your expressions, rather than facing the older person when talking.

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Shibley Rahman talks about his book, Living Better with Dementia

shibley

Identifying current global policy challenges for living well with dementia, this book tackles controversial topics at the forefront of public and political debate, and highlights pockets of innovation and good practice from around the world to inform practical solutions for living well with dementia in the future. We talked to Dr Rahman about the book and his thoughts on the current process of dementia diagnosis. 

What motivated you to write Living Better with Dementia?

The name of the only national dementia strategy for England so far was ‘Living well with dementia’. This name is problematic, as it potentially sets people up to fail. What if a person has a bad day? We’re all entitled to have a bad day.

The actual strategy expired in 2014, exactly five years after it was launched by a previous government in 2009. I wanted to keep with the ethos that it is possible to aspire to live as well as possible with dementia. The prism of long term conditions suits people with dementia much better than the approach which relies solely on drug treatments.

The title of the book, Living Better with Dementia, is in fact from Chris Roberts, living with mixed dementia of the Alzheimer type and vascular type. I am honoured that Chris wrote one of the forewords. Kate Swaffer, Chair of Dementia Alliance International, wrote the main foreword.

There has to be an alignment of rhetoric and reality. That’s why I respect the work of Beth Britton who wrote the final foreword. Beth has an intimate lived experience of dementia from family, and professional experience in how this impacts on actual care. The topics of my book give a realistic state-of-the-art exploration of key themes in wellbeing in dementia, not entrenched in dogma, but which promote awareness and education. Continue reading