As a nurse specialising in palliative care, farmer and permaculture designer, with a spiritual self deeply rooted in Earth based seasons and patterns.... issues relating to death and dying are intrinsic to most elements of my life. A core part of my experience as a permaculture designer is to ensure as good a quality of life from an Earth Care, People Care and Fair Shares perspective as possible. However, within my work and life I frequently observe that how we die (in the UK) is detrimental to our care of the Earth, each other and how we share resources fairly.
The general aim of this post is to explore how permaculture design can positively influence our experience of how approach the end of our lives and how we die. My theme throughout, has been to create a space to direct and suggest resources for our diverse lives, rather than to be prescriptive with what has worked for me
Most people in the UK die in acute hospitals, often having undergone unnecessary and resource and human energy wasteful procedures. Research consistently tells us that most people would actually like to die in their own home, away from a busy acute medical environment, which the vast majority of people do not need as they approach the end of their lives
My experience as a specialist nurse working alongside dying people and their families is that the majority of people are pleased and relived to talk not only about their fears around death and dying, but also to make positive plans for the kind of death they would like. My own observations of dying people, and then bereaved relatives is that those who have talked openly and honestly about death and dying, and have planned for what they would like to happen tend to have more peaceful, meaningful time at the end of their life.
Obviously we cannot all predict how, when and where we all die, but the likely hood of having the death that we want, which takes into account our needs and wishes, plus the right support for those around us improves vastly, if we make plans for it
Within British culture, death dying and bereavement are still issues that many of us feel are difficult and indeed taboo to talk and learn about. Popular media images of death and dying often portray an image of inevitable suffering, as does ongoing media coverage highlighting the inadequacies of Health and Social services in providing good End of Life care and support.
As a result many people in live in fear of death and the dying process and ultimately do not have the death they would have liked, Unspoken anxiety, misconception, lack of control and perceived ‘bad death’ experienced by loved ones of a dying person, can contribute towards problematic grief. Research demonstrates this can ultimately lead to a lifetime of being unable to positively address issues around any loss in life (a job, home, relationship, health), resulting in poor emotional and physical health, placing a huge burden on not only the wellbeing and happiness of the person involved, but on health and social care services and the impact of that on the economy.
Health and Social Care services in Britain are pushed beyond capacity in terms of appropriate support available to people in many areas. Also, because of the pressures on them they often do not adequately offer people individualized care they need and want. Making advanced plans for how we would want to be cared for can mean that these resources can be targetd towards appropriate care for us and others, rather than being used for care we do not need or want. In addition we might want to consider other forms of support if we need it, friends, family, Soul Midwives etc.
Currently in the UK, along with many other aspects of our health and social care systems, there are huge inequalities in whether or not people with progressive serious health problems are encouraged to talk about and plan for death and dying. If people are given the space to do so, it’s often at a time when they are feeling too unwell to be able to achieve what they would like to happen
Designing our own End of Life care when we are fit and well, and discussing it with friends and family, can (will, in my experience), enable others to be inspired to think about their own plans, meaning more of us will hopefully have the death we would like.
The Funeral Industry in the UK is big business and the financial cost of a typical funeral in the UK has risen by over 80% since 2004, way above inflation. And the average price of a very basic cremation, using a funeral director is about £3,400 (a burial is about well over £4000). This puts the cost of dying beyond the financial means of many people, resulting in further stress and often for a funeral, which may not be appropriate and relevant for the person who has died, as relatives have arranged it or friends who are in a state of acute grief. A significant proportion of the monetary costs charged by some Funeral Directors are for things that are not ‘essential’ (as well as being environmentally harmful) Many people believe that a Funeral Director needs to be used to organize events after someone has died, but in fact its perfectly legal for our families and friends to deal with all the aspects of our after death care and ceremonies undertaken. There are of course also professionals (Funeral Directors, Celebrants etc.) who will help us to have the care after death that fits with our ethics and personal needs and wants.
A growing number of people within the permaculture community and beyond are increasingly concerned about how we die is impacting on the Earth. In addition many more people do not have the awareness that this environmental harm exists within our death culture in the UK. As previously touched on, the environmental impact of death, dying and especially the Funeral ‘industry’, (cremation, embalming, clothing, coffins, large oil consuming cars, buildings used) can be deeply damaging to our care of the Earth. In addition in Hospitals and other official ‘Health Care’ resources in the rich world are very environmentally costly places in terms of equipment, power needs and location to those close to us
Talking about death and dying is generally still a taboo and challenging subject within British culture. People around us may be initially resistant or generally respond negatively to engage with us about planning for our End of Life. I have also found this within the Permaculture Community too, (“oh I think I’ll go to another session where there is something more positive going on”). On a personal level past experiences of the death of others, our role as carers, serious illness or any other kind of loss can make it a difficult subject to explore.
The same past experiences that we have identified as ‘boundaries’ may also bring a wealth of personal resources and add an extra level to our desire to ensure that plans for our own End of Life are created. In addition, other people in our lives may be nearing the end of theirs and have some ideas about what they would like to happen.
Locally, national and globally there is a growing awareness about how our experiences of death impact on many kinds of resources: personal, health, financial, political, environmental, spiritual… further on in this article I’ve listed some of my favorite written resources (books, websites, blogs, community events..) relating to End of Life, death and after death, which may help you with your own designing. There are also many other resources around which may be more appropriate to our diverse lives, social media has some fantastic links, once you get searching.
The evident growing awareness of others within the permaculture community to think about using permaculture design to explore issues around death, dying and bereavement ,is also a resource to be embraced. An informal workshop I ran at last years National Diploma Gathering on the subject generated some great discussion and ideas for designing and is something that I would certainly repeat again at other permaculture events
Having examined how the current state of End of Life experience in the UK is often at odds with the guidance provided by permaculture, its good to know that there are a wealth of resources available to help design our death, in keeping with how we live the rest of our lives
The following are some of my favorites and in some way address the different topics covered in this post
The Dead Good Funerals Book by Sue Gill & John Fox
The Natural Death Handbook from The Natural Death Centre
The Pagan Book of Living and Dying by Starhawk
The Tibetan Book of Living and Dying by Sogyal Rinpoche
When Parents Die by Rebecca Abrams
As Big as it Gets (supporting a child when a parent is seriously ill) from Winstons Wish
Jan Martin (one of my favorite permaculture bloggers!) , created a design for her own end of life after participating the informal discussion I facilitated around the subject. Here is the link to the fantastic blog post about it
As always the Permaculture Principles are available to guide our work and I personally found Holmgrems really useful when looking at my own End of Life design
Implement and maintain
I have found that breaking the design into 3 sections “What I would like to happen in the time (weeks/days hours) before I die”, “What I would like to happen as I die” and “After I die” is a really useful way to think and plan
Ideas for how actually to record our designs are :
Online: - (via social media/website/blog?), though we need to consider that we may not all have power for Internet access in the future
A scrap book /Journal /box that can be added to and changed as time goes by
Statement, Letter, document (perhaps as an electronic file and printed out and kept with other personal documents?)
A document designed by someone else (there is example formats in some of the links above
Several more official legal related documents are well worth looking into as part of your plan
Organising a Power of attorney (available for either financial related decisions and/or health care/treatment issues)
Advanced Directives (‘living will’)
Again more details about these are available from the links above
Letting others know the existence of your design and dating any amendments/additions can really help others to be able to implement it if you are not able to make your needs known as you approach the end of your life. In addition having a regular ‘evaluation’ of your design timetabled into your life (for example, the day after your birthday, Christmas eve, New years day?)
Hopefully this post will have given you some ideas and a base from which to create your own design for your End of Life. As people who use permaculture to guide so many aspects of our lives, I am confident that that using the ethics, principles and other design tools to design how we die, will also radically contribute further to how we regenerate our land, communities and self.