COMMENT
1018
T
he Florence Nightingale Foundation raises funds to provide scholarships for nurses, midwives and allied health professionals to enable them, through study, to promote innovation in practice and to extend their knowledge and skills to meet changing needs. In May 2014, I visited the USA to understand better the end of life (EOL) and palliative care pathway for both children and adults. In light of recent bad publicity around the Liverpool Care Pathway and lack of dignity in hospitals, I felt that a scholarship to understand, observe and add knowledge to our current understanding of EOL and palliative care could benefit the NHS. Although I visited several organisations in a number of states, I will focus here on my experiences at the Zen Hospice Project in San Francisco, California. In the 1980s, AIDS hit San Francisco and this project arose from the epidemic to provide outreach to the homeless. The Zen Centre dedicated a house (six beds) to the dying and it was in this house that I received the caregiver training I describe below.
Consciously in the moment In most of the US organisations and hospices I visited, there are large numbers of volunteers who keep many of these organisations running. The Zen Hospice is no different, with a group of 35–40 volunteers who work a minimum of 5 hours per week. There is a regular training session (three times a year) in mindfulness called ‘Mindful caregiver: caring for self and others’. The idea of being ‘consciously in the moment’ is not new, but what was interesting was attempting to adopt the patient’s perspective. How would it feel as a patient to know that the member of staff is not wholly with you, but distracted by his or her own thoughts and feelings? Martino (2013) suggests that being in the moment is where we are void of destructive thoughts and judgments, and open instead to all that is going on. The Zen teacher Suzuki Roshi (1971) said ‘in the beginner’s mind there are many possibilities, but in the expert’s there are few’. A ‘don’t know mind’, which I was encouraged to cultivate, describes a mind that is open and receptive, a mind not limited by agendas, roles and expectations—a mind that can look with fresh eyes.
Writing an ethical will As part of our caregiver training, we were shown how to write an ‘ethical will’, a document designed to pass on ethical values from one generation to the next. The goals are to link a person to both their family and cultural history; to clarify their ethical and spiritual values; and to communicate a legacy to future generations. An ethical will is not a legal document that distributes your material wealth, but a heartfelt expression of what truly matters most in your life. Today, ethical wills are being
written by people at turning points and transitions, and when facing challenging life situations.They are usually shared with family and community while the writer is still alive. A useful template might be: ■■ Opening thoughts: who you want to share your ethical will with ■■ Values and beliefs: what you want people to know ■■ What has been insightful meaningful for you: for example, lessons from your life, people you admire ■■ Hopes for the future: how you want to be remembered ■■ Concluding thoughts: who to thank and love.
The importance of touch As part of our training, we were lucky enough to meet and discuss touch in hospice care with Irene Smith (everflowing.org) who introduced Touch Awareness in Caregiving on the West Coast of the USA. Irene was an assistant for over 10 years to her teacher, the late pioneering thanatologist (someone who scientifically studies death) Elisabeth Kübler-Ross,. There are 5 million touch receptors in the human skin, and as many as 3000 in a single fingertip. They send messages along the spinal cord to the brain, so, as caregivers, we have the opportunity literally to transmit healing messages to our patients. Touch is intimate, but task-orientated touch diffuses that intimacy. For example, an activity such as feeding or dressing gives permission for touch, but is still defined as feeding or dressing. But when touch is the primary intention, it calls for great skill and practice. Irene explained that ‘mindful touch’ is intentional touch delivered through a therapeutic presence; deep listening to verbal and non-verbal feedback; verbal encouragement from the caregiver; and a gentle and supportive contact.‘Mindful touch’ is also about trust— trust that neither person will invade the physical or emotional territory of the other person. Contact will be made with the permission of both people. We were also reminded that, with a medically frail person, the agreement might be developed and given in silence. Patients who are approaching the end of their lives need high-quality treatment and care that supports them in living as well as possible until they die with dignity. My experiences at the Zen Hospice Project, and elsewhere in the USA, have given me valuable insights into the different ways that these crucial goals BJN can be fulfilled. Martino J (2013) How to Be In The Moment Consciously vs. Mentally. http://tinyurl.com/jwp7ntj (accessed 9 October 2014) Roshi S (1971) Zen Project San Francisco. http://suzukiroshi.sfzc. org/dharma-talks/ (accessed 9 October 2014)
Anne-Maria Olphert Chief Nurse Quality Officer, Director of Nursing for Erewash CCG, Derbyshire
© 2014 MA Healthcare Ltd
Editorial Board David Aldulaimi, Consultant Physician, Gastroenterologist, Worcestershire Acute Hospitals NHS Trust Palo Almond, Academic and Research Consultant, Anglia Ruskin University Irene Anderson, Prinicipal Lecturer and Reader in Learning and Teaching in Healthcare Practice, University of Hertfordshire Russell Ashmore, Senior Lecturer in Mental Health Nursing, Sheffield Hallam University Steve Ashurst, Critical Care Nurse Lecturer, Maelor Hospital, Wrexham Christopher Barber, Residential Nurse Dimitri Beeckman, Lecturer and Researcher, Florence Nightingale School of Nursing & Midwifery, King’s College London Lizzy Bernthal, Research Fellow and Lead Nursing Lecturer, Medical Directorate, Birmingham Martyn Bradbury, Clinical Skills Network Lead, University of Plymouth Emma Collins, Senior Sister, Practice Development Lead, Brighton and Sussex University Hospitals NHS Trust Alison Coull, Lecturer, Department of Nursing and Midwifery, University of Stirling, Scotland David Delaney, Charge Nurse, Clinical Research, Alder Hey Children’s Hospital Jane Fox, Independent Consultant, Derbyshire Alan Glasper, Professor of Child Health Nursing, University of Southampton Angela Grainger, Assistant Director of Nursing, King’s College Hospital NHS Trust, London Michelle Grainger, Ward Manager, Moseley Hall Hospital, Birmingham Helen Holder, Senior Lecturer, Nursing Studies, Birmingham City University Mina Karamshi, Specialist Sister in Radiology, Royal Free Hospital, Hampstead Joanne McPeake, Acute Specialist Nurse/Senior Staff Nurse in Critical Care; Honourary Lecturer/Practitioner in Critical Care, University of Glasgow Andrew McVicar, Reader, Dept of Mental Health & Learning Disabilities, Anglia Ruskin University Danny Meetoo, Lecturer in Adult Nursing, University of Salford Mervyn Morris, Director, Centre for Mental Health Policy, Birmingham City University Aru Narayanasamy, Associate Professor, University of Nottingham Ann Norman, RCN Criminal Justice Services Nursing Adviser and Learning Disability Nursing Adviser Joy Notter, Professor, Birmingham City University & Saxion University of Applied Science, Netherlands Anne-Maria Olphert, Chief Nurse, Director of Quality, Erewash CCG, Derbyshire Hilary Paniagua, Senior Lecturer, School of Nursing & Midwifery, University of Wolverhampton Ian Peate, Director of Studies, Head of School, Gibraltar Health Authority Bernadette Porter, Nurse Consultant, National Hospital for Neurology and Neurosurgery, UCLH NHS Trust Angela Robinson-Jones, Consultant Nurse, Gynaecology, Liverpool Women’s Hospital John Tingle, HRS Reader in Health Law, Nottingham Law School, Nottingham Trent University Geoffrey Walker, Matron for Medicine, Cardiology and Specialist Nursing Services Poole Hospital NHS Foundation Trust Catherine Whitmore, Research Nurse, Diabetes and Endocrinology, University of Liverpool Jo Wilson, Director, Wilson Healthcare Services, Newcastle Cate Wood, Lecturer, Bournemouth University, PhD student at London School of Hygiene and Tropical Medicine Sue Woodward, Lecturer, Specialist and Palliative Care, Florence Nightingale School of Nursing and Midwifery, King’s College London
The mindful caregiver: palliative care in California
British Journal of Nursing, 2014, Vol 23, No 19
British Journal of Nursing. Downloaded from magonlinelibrary.com by 130.194.020.173 on November 23, 2015. For personal use only. No other uses without permission. . All rights reserved.
1018
T
he Florence Nightingale Foundation raises funds to provide scholarships for nurses, midwives and allied health professionals to enable them, through study, to promote innovation in practice and to extend their knowledge and skills to meet changing needs. In May 2014, I visited the USA to understand better the end of life (EOL) and palliative care pathway for both children and adults. In light of recent bad publicity around the Liverpool Care Pathway and lack of dignity in hospitals, I felt that a scholarship to understand, observe and add knowledge to our current understanding of EOL and palliative care could benefit the NHS. Although I visited several organisations in a number of states, I will focus here on my experiences at the Zen Hospice Project in San Francisco, California. In the 1980s, AIDS hit San Francisco and this project arose from the epidemic to provide outreach to the homeless. The Zen Centre dedicated a house (six beds) to the dying and it was in this house that I received the caregiver training I describe below.
Consciously in the moment In most of the US organisations and hospices I visited, there are large numbers of volunteers who keep many of these organisations running. The Zen Hospice is no different, with a group of 35–40 volunteers who work a minimum of 5 hours per week. There is a regular training session (three times a year) in mindfulness called ‘Mindful caregiver: caring for self and others’. The idea of being ‘consciously in the moment’ is not new, but what was interesting was attempting to adopt the patient’s perspective. How would it feel as a patient to know that the member of staff is not wholly with you, but distracted by his or her own thoughts and feelings? Martino (2013) suggests that being in the moment is where we are void of destructive thoughts and judgments, and open instead to all that is going on. The Zen teacher Suzuki Roshi (1971) said ‘in the beginner’s mind there are many possibilities, but in the expert’s there are few’. A ‘don’t know mind’, which I was encouraged to cultivate, describes a mind that is open and receptive, a mind not limited by agendas, roles and expectations—a mind that can look with fresh eyes.
Writing an ethical will As part of our caregiver training, we were shown how to write an ‘ethical will’, a document designed to pass on ethical values from one generation to the next. The goals are to link a person to both their family and cultural history; to clarify their ethical and spiritual values; and to communicate a legacy to future generations. An ethical will is not a legal document that distributes your material wealth, but a heartfelt expression of what truly matters most in your life. Today, ethical wills are being
written by people at turning points and transitions, and when facing challenging life situations.They are usually shared with family and community while the writer is still alive. A useful template might be: ■■ Opening thoughts: who you want to share your ethical will with ■■ Values and beliefs: what you want people to know ■■ What has been insightful meaningful for you: for example, lessons from your life, people you admire ■■ Hopes for the future: how you want to be remembered ■■ Concluding thoughts: who to thank and love.
The importance of touch As part of our training, we were lucky enough to meet and discuss touch in hospice care with Irene Smith (everflowing.org) who introduced Touch Awareness in Caregiving on the West Coast of the USA. Irene was an assistant for over 10 years to her teacher, the late pioneering thanatologist (someone who scientifically studies death) Elisabeth Kübler-Ross,. There are 5 million touch receptors in the human skin, and as many as 3000 in a single fingertip. They send messages along the spinal cord to the brain, so, as caregivers, we have the opportunity literally to transmit healing messages to our patients. Touch is intimate, but task-orientated touch diffuses that intimacy. For example, an activity such as feeding or dressing gives permission for touch, but is still defined as feeding or dressing. But when touch is the primary intention, it calls for great skill and practice. Irene explained that ‘mindful touch’ is intentional touch delivered through a therapeutic presence; deep listening to verbal and non-verbal feedback; verbal encouragement from the caregiver; and a gentle and supportive contact.‘Mindful touch’ is also about trust— trust that neither person will invade the physical or emotional territory of the other person. Contact will be made with the permission of both people. We were also reminded that, with a medically frail person, the agreement might be developed and given in silence. Patients who are approaching the end of their lives need high-quality treatment and care that supports them in living as well as possible until they die with dignity. My experiences at the Zen Hospice Project, and elsewhere in the USA, have given me valuable insights into the different ways that these crucial goals BJN can be fulfilled. Martino J (2013) How to Be In The Moment Consciously vs. Mentally. http://tinyurl.com/jwp7ntj (accessed 9 October 2014) Roshi S (1971) Zen Project San Francisco. http://suzukiroshi.sfzc. org/dharma-talks/ (accessed 9 October 2014)
Anne-Maria Olphert Chief Nurse Quality Officer, Director of Nursing for Erewash CCG, Derbyshire
© 2014 MA Healthcare Ltd
Editorial Board David Aldulaimi, Consultant Physician, Gastroenterologist, Worcestershire Acute Hospitals NHS Trust Palo Almond, Academic and Research Consultant, Anglia Ruskin University Irene Anderson, Prinicipal Lecturer and Reader in Learning and Teaching in Healthcare Practice, University of Hertfordshire Russell Ashmore, Senior Lecturer in Mental Health Nursing, Sheffield Hallam University Steve Ashurst, Critical Care Nurse Lecturer, Maelor Hospital, Wrexham Christopher Barber, Residential Nurse Dimitri Beeckman, Lecturer and Researcher, Florence Nightingale School of Nursing & Midwifery, King’s College London Lizzy Bernthal, Research Fellow and Lead Nursing Lecturer, Medical Directorate, Birmingham Martyn Bradbury, Clinical Skills Network Lead, University of Plymouth Emma Collins, Senior Sister, Practice Development Lead, Brighton and Sussex University Hospitals NHS Trust Alison Coull, Lecturer, Department of Nursing and Midwifery, University of Stirling, Scotland David Delaney, Charge Nurse, Clinical Research, Alder Hey Children’s Hospital Jane Fox, Independent Consultant, Derbyshire Alan Glasper, Professor of Child Health Nursing, University of Southampton Angela Grainger, Assistant Director of Nursing, King’s College Hospital NHS Trust, London Michelle Grainger, Ward Manager, Moseley Hall Hospital, Birmingham Helen Holder, Senior Lecturer, Nursing Studies, Birmingham City University Mina Karamshi, Specialist Sister in Radiology, Royal Free Hospital, Hampstead Joanne McPeake, Acute Specialist Nurse/Senior Staff Nurse in Critical Care; Honourary Lecturer/Practitioner in Critical Care, University of Glasgow Andrew McVicar, Reader, Dept of Mental Health & Learning Disabilities, Anglia Ruskin University Danny Meetoo, Lecturer in Adult Nursing, University of Salford Mervyn Morris, Director, Centre for Mental Health Policy, Birmingham City University Aru Narayanasamy, Associate Professor, University of Nottingham Ann Norman, RCN Criminal Justice Services Nursing Adviser and Learning Disability Nursing Adviser Joy Notter, Professor, Birmingham City University & Saxion University of Applied Science, Netherlands Anne-Maria Olphert, Chief Nurse, Director of Quality, Erewash CCG, Derbyshire Hilary Paniagua, Senior Lecturer, School of Nursing & Midwifery, University of Wolverhampton Ian Peate, Director of Studies, Head of School, Gibraltar Health Authority Bernadette Porter, Nurse Consultant, National Hospital for Neurology and Neurosurgery, UCLH NHS Trust Angela Robinson-Jones, Consultant Nurse, Gynaecology, Liverpool Women’s Hospital John Tingle, HRS Reader in Health Law, Nottingham Law School, Nottingham Trent University Geoffrey Walker, Matron for Medicine, Cardiology and Specialist Nursing Services Poole Hospital NHS Foundation Trust Catherine Whitmore, Research Nurse, Diabetes and Endocrinology, University of Liverpool Jo Wilson, Director, Wilson Healthcare Services, Newcastle Cate Wood, Lecturer, Bournemouth University, PhD student at London School of Hygiene and Tropical Medicine Sue Woodward, Lecturer, Specialist and Palliative Care, Florence Nightingale School of Nursing and Midwifery, King’s College London
The mindful caregiver: palliative care in California
British Journal of Nursing, 2014, Vol 23, No 19
British Journal of Nursing. Downloaded from magonlinelibrary.com by 130.194.020.173 on November 23, 2015. For personal use only. No other uses without permission. . All rights reserved.
