Within my role at the hospital I work quite closely with those who work in palliative or end of life care. For these people, they are there for people at the point where medicine can no longer try to fix them or treat their symptoms to live. Palliative care is there for people who are within the last stages of their life and treatment becomes largely about pain management or making the remainder of their life as comfortable as possible. Such as with my role, the medical side of this is very close to the human side of it. I speak to families who are experiencing bereavement and grief quite possibly at it’s sharpest time, however those in palliative care are involved at a point in people’s lives where there is a combination of varied and intense emotions both with the dying and their families.
Death Cafe has introduced me to many topics involving death and dying that I would not have otherwise experienced. One thing I am fascinated by is the desire and need in people to have a death that fits in with what they want. Generally people want to die peacefully, painlessly and not alone. Unfortunately although most people also want to die at home this is not usually the case, with a large number of those dying in our hospitals and other facilities based around care. The modern reality of death does not always fit in with the conceptual or imagined death that we conceive during life, but I believe that this is slowly changing. The other mindset I am coming across more and more is that some people are against the idea of medicating their way through death, believing that this is denying people the opportunity to experience death how it should be. I honestly believe that any of this is a personal choice, but exactly in that sense it should be optional where possible.
Also through Death Cafe and social media I have met some really interesting people, and this includes people from all different careers and backgrounds who possess an interest in death which unites them all. It was a couple of years ago that I first heard of a Soul Midwife when one contacted me to ask if I knew of any opportunities to work. A Soul Midwife is someone who is trained to accompany someone in the final stages of their life. They are skilled in making the dying process more comfortable and to help with a dignified and peaceful death. You may also hear the term End of Life Doula or a Death Doula/Midwife. Some of these roles, namely the soul midwives, focus on the more spiritual and care side of dying with support to the person dying and their families through talking to them. Death Doulas can also extend their assistance to the dying and their families by assisting in the funeral planning, financial and legal sides of death as these may be areas that they have know knowledge of or require guidance on.
It is thought there are around 1,000 soul midwives and 100 death doulas who are trained to support dying people in this way in the UK, however I do not know how many of these are working or how accurate these figures are. They can work privately for people or families, or actually work directly with hospitals and hospices to support the people in their care. The hospital I work for has been working on putting together a team of people trained in this way since just before the pandemic, and it is hoped that this will be established as soon as the restrictions allow.
I genuinely think that the need for people who work in this field is underestimated greatly. The way in which people die is not always discussed or thought about because of the emotional experience of those left behind who do not always want to discuss it afterwards. Or, although there may be concerns made about those dying and their experiences, ultimately the medical profession is (rightly so) focused much more on the sick and saving lives than on those who they cannot help in that way. For a long time we have just accepted how we die without a thought about how it can change, but there are more and more people out there who want to help and with the skills to help. In an ideal world, everyone would have someone like a death doula or a soul midwife with them in the final stages if they wanted. I feel like if we knew this comfort was definitely available then we may not fear the event as much as we do. In the context of COVID-19 this is hard to imagine but, if anything, the pandemic has heightened people’s awareness of death more than they may have ever experienced.