Palliative care: what is a soul midwife?

Kiera has been a soul midwife for more than a decade, bringing another element to her role as a lead nurse at Skanda Vale Hospice.

“There are many overlaps between birth and death,” she explains.

“A midwife supports the pregnant woman and her family, negotiating priorities and changing plans. As a soul midwife, my role is similar.”

Also known as a death doula or an end-of-life companion, a soul midwife supports people who are dying. They work with individuals to enable them to regain some control over their situation and ensure their independence is maintained and their preferences heard.

It’s not a clinical role but each individual brings a different set of skills to the position. Kiera offers soul midwifery (outside her hospice role) in exchange for donations from people, so if they can't afford anything, it's offered for free.

As a palliative care nurse, Kiera understands the health care system, the terminology, the support available and can recognise the physical signs of approaching death.

A soul midwife generally provides support at home, but they could also be in a hospital or elsewhere. The role could be practical, working with someone in the last year of their life, where key tasks could be making supper and feeding the dog so a carer can have a whole evening off. Or it could be about being there at the very end of someone’s life, while they are dying, and caring for the person’s body after death.

Kiera says: “I can help people challenge assumptions. People think there are lots of legal obligations they need to consider after a loved one has died. But the main requirements are registering the death and ensuring safe and legal disposal of a person’s body. Everything else is up to the individual, but many people don’t know this.

“You don’t need a funeral director if you’d prefer not to have one. I supported one family to keep the body of their loved one at home for three days after the death. That’s what they wanted.”

Kiera also takes away some of the fear for the friends and family of those who are dying.

“It may be the first time they’ve experienced the death of a loved one. Perhaps they’ve never heard the changes in a person’s breathing as they approach the end of their life. What’s normal? When do they need to call for help? I’m there to take away the overthinking and additional worry,” she says.

Kiera’s dedicated her life to ensuring people make the most of their lives by talking about death and dying. She creates environments where it’s OK to talk about death – inside and outside her work frequently addressing community groups through talks and workshops.

“We all need to take an open approach to talking about death and not wait until we have a terminal diagnosis to approach the issue head-on,” she says.

“Future care planning can involve death planning, but that remains scary to some people. If we don’t talk about it, it has the biggest impact on those we love most, potentially placing a massive burden on them when they’re already grieving,” she says.

“It helps that I live where I do,” she adds. “There’s quite an alternative community here in west Wales. I had a client who was building a coffin in the garage for their mum, and another who made her own shroud.”

Shetland ponies, elephants and dogs

Kiera’s involvement in soul midwifery developed in parallel to her work as a complementary therapist and now her outside interests support her work as a lead nurse in a hospice.

“We’re all passionate about excellent palliative care in the hospice where I work and we can be flexible in our approach. If someone’s biggest stressor is the care of their dog, that’s what we focus on first.

“For staff coming from a hospital environment, it feels very different. One person asked me what time breakfast was. The answer is: any time our patients want it."

Clinical needs at the hospice are a priority, but Kiera doesn’t shy away from considering alternative approaches. “I'll always remember us getting a Shetland pony into our lift so he could be taken to the patient’s bedside,” she says.

“We had to have a bucket with him all the way, just in case. But it was absolutely worth it. The patient was moved to tears."

Two pet therapy volunteers regularly bring their dogs to the hospice. “They have such therapeutic value, not just for the patients but for the whole team,” Kiera says.

Trips out are also tailored to meet individuals’ needs. For some, that means visiting the beautiful local beaches or the elephants who are part of the Skanda Vale community. Others just want to go to a pub or cafe.

For those who can’t go out, or would prefer to remain on site, there are life-affirming activities such as regular sociable lunches. “We get a delicious meal cooked and there’s a lovely buzz in the room. It’s a time for patients and their carers, and the team are all invited too.”

There’s also a welcoming garden at the hospice with areas to sit, including a round house with a wood-burning stove which is often used for storytelling and poetry.

A therapeutic approach

Volunteer complementary therapists visit regularly, offering a huge range of options including aromatherapy, acupuncture and sound therapy.

“As a complementary therapist myself, there are occasions where I can offer a group sound bath. These are relaxing, immersive experiences where participants listen to soothing music, powerful vibrations, and sometimes nature sounds. I offer these as a volunteer, not in my role as a nurse. We also have wellbeing days for the team because we all need to look after ourselves,” says Kiera.

Carers can access complementary therapies as well.

"Some choose to take some alone time but for many, coming to the hospice is a chance for us to offer care and support to them. It can be a real lifeline to enable them to keep going,” Kiera explains.

The focus is on providing comfort, enjoyment and uplift which means something different for everyone. And perhaps that’s what sums up what Kiera does in her work and voluntary roles: empowering people to make the most of the beauty in life.