End of Life Doulas
A more recent development in end of life care is the training of end of life doulas, sometimes called Death Midwives en.wikipedia.org/wiki/Death_midwife.
According to the website of Living Well Dying Well:
“70% of people would like to die in their homes, but only 17% do.”
Doulas are not a new idea. In indigenous cultures around the globe, and for thousands of years, people have stayed in their homes to die, looked after by their family and local community. In the western world, this concept has been undermined by a gradual shift towards hospitalisation, taking responsibility away from the person and those around them. However it’s possible to make death an intimate, spiritual and peaceful experience for everyone involved, whether medical support is required or not.
Doulas are trained in supporting people at the beginning (birth doulas) and end of life. ‘End of Life Doulas’ walk alongside the individual, their family and their community as an informed companion. They are sensitive to practical, emotional and spiritual needs and are a consistent and compassionate presence, with knowledge, experience and understanding. Their role is to preserve the quality of wellbeing, sense of identity and self-worth from the moment of diagnosis. They do not replace medical care, but facilitate access to resources that are available and also recognise the frequently intangible elements of life that can have a major impact on the family as they strive to maintain the best quality of life possible.
It is often easier to discuss your diagnosis and what it means to you with a person to whom you are not emotionally close. Doulas spend most of their time listening to the person, finding out his/her wishes for the end of their lives, their funerals etc. Many people like to make a scrapbook as something to leave to their loved ones, some prefer to write letters, others make a video or recording. Some people have no wish to do anything of the sort.
It is the doula’s responsibility to smooth the path for each individual. Similarly, it can be very helpful to discuss with a doula what you do or do not want by way of a funeral service.
Doulas are trained to understand grief (which often begins at diagnosis) as well as the emotional and spiritual responses to death. They learn to explain the physical changes at the end of life and help to increase comfort, integrative health and support therapies.
In addition, they learn the rituals and practices within cultural and faith groups and the socio-legal requirements as well as spiritual and self-care practices. They know what is available through funeral directors’ practices.
In short, they provide comfort, knowledge and support that is invaluable when the patient’s and carer’s resources are stretched to the limit. Some give their services free or are part of a hospice team, others work privately and their fees are agreed in advance.
For more information eol-doula.uk/what-is-an-end-of-life-doula
Hospice care places a high value on dignity, respect and the wishes of the person who is ill. It aims to look after all their medical, emotional, social, practical, psychological, and spiritual needs, and the needs of the person’s family and carers. Looking after all these aspects is often referred to as “holistic care”.
It is important to be aware that hospices are not just places where people go to die. In fact, most hospice care takes place at home. They also provide respite care. Some people have several stays in a hospice as it is often the best place to adjust pain medication, since they excel in controlling pain.
Hospice care is free, paid for by a combination of NHS funding and public donation.
Hospices provide palliative care as well as end-of life care. Complementary medicine and therapies have an undisputed role in both palliative care and end of life care — possibly because the general feeling of those who rail against Complementary Medicine is that in such circumstances it can do no harm and just might do some good.