Hospice Care in Focus: Putting dying back into living

As a former hairdresser who, in her 30s, made a life-changing career pivot into being a health professional, Sophia spent over 20 years helping people at the end of their lives, and opening up conversations around death and dying. Much of her approach is based on experiences not just of the patients she helped in ICU, care homes and hospices, but from losing members of her own family too.

She believes that there is a powerful case for better integrating death and dying into our everyday lives, in order to help change attitudes and treat people well at the end of theirs.

Growing up, Sophia’s Polish mother - who had experienced imprisonment in a Soviet labour camp - instilled in her children an openness around death, and a strong belief that dying is an essential part of living. 

“As a child we were always involved in the conversation. We were brought up seeing death as part of living. So that we normalise dying. No one is going to escape dying.

“One elderly lady I talked with in a care home said to me - in a jokey way - did I realise that none of us are going to get out of here alive? She was happy to talk about it…she knew she was coming to the end of her life.

“Very often people like her feel frightened talking about it. But actually a lot of people who start to talk then start to understand where they are. It seems to just roll naturally after that.”

Sophia believes that it’s important to meet people where they are. Drawing on her own experience when her sister was diagnosed with breast cancer, an intensely treatment-focused care programme led to reflections that it is incredibly important to listen and be open, honest and clear about what you can offer as a health professional. 

During her career, Sophia noticed that there would often be a struggle between healthcare professionals in recognising that a patient was dying. Something she experienced with her loved ones too. 

“I said ‘she's dying - and nobody's talking about that’.”

When her sister experienced a seizure near the end of her life, Sophia questioned a team of consultants who were set on continuing treatment - without addressing the simple fact that her sister was dying:

“I could see that my sister was going in and out of consciousness and said, do you mind if I ask some questions here? So I asked what treatment outcomes they had in mind. And the consultants said, ‘we've got different options to give your sister’ and I said, ‘but she's got three consultants involved’. And they were all trying to do different things. But by that time, my sister had actually gone into what I call deep sleep. I said ‘she's dying - and nobody's talking about that’.”

As soon as palliative care services were brought in, care for her sister and family drastically improved, as they united to work together with a shared purpose. 

Despite the ongoing improvements made in modern medicine, Sophia doesn’t believe it always tallies with providing a better quality of life, and focuses too heavily on the prevention of death. 

“It's about giving people the information so that they can make those decisions and say, actually, at this point, please don't do that.”

Sophia lost her sister to breast cancer, and also experienced the loss of her brother, from a subarachnoid brain haemorrhage, in the intensive care unit where she worked. She says that it was another example of how health professionals often focus their attention solely on treatment rather than considering what is best for the patient and the end of their life.

“They wanted to try treatments on him, but as a relative I asked them to turn all the machines off at the bedside. They wanted to give him oxygen - but why would you do that? We just wanted to be around him. And I know it caused a little bit of friction, but [the doctor] agreed and didn't put the oxygen on... he died very peacefully.”

It was near the start of Sophia’s health career that she stepped into the bereavement and palliative care world. As part of her course, she was struck with a new idea, which was based on a complaint she saw a consultant handle during her training:

“A patient had died, and I was part of the team supporting the consultant who saw the patient. And I just thought, ‘there’s got to be something a bit more to this than having someone complain just so that they can feel ‘seen’. So I started a bereavement service whereby a condolence card was sent two weeks following the death of a patient, after six months an invitation to come to a service, and then a card for the first anniversary."

“I remember getting a letter back from somebody who said that she had been left on her own, and it was so, so lovely to know that someone was thinking of her.”

Was it hard supporting other people whilst she herself was going through a similar experience? Whilst for most, it would probably have been practically unbearable, Sophia’s professionalism and compassion drove her to support other people, and she put her own emotions and pain to one side so that she could help others.

“When we went to one remembrance service, a gentleman came over to me and said that he had no idea that I’d been looking after his 21 year-old daughter in intensive care after a bike accident. He said, ‘you've stood with me, organised everything and listened…and I had no idea what you’ve been through yourself.’ And I said ‘it wasn't my place to tell you’.”

During her career, thanks to her hard work, Sophia helped a hospice she worked at move from ‘needing improvement’ to ‘outstanding’ - something which she puts down to ‘positive culture change’ within the hospice. Stopping siloed working was a big factor in this change, alongside better communication and outreach work with local communities, and developing a more coordinated approach with other health systems. 

But underpinning all of this was Sophia’s philosophy of opening up the conversation around death and dying with patients, families and communities:

“I had the fortunate experience of going out with a CQC (Care Quality Commission) inspector into a patient’s home. It was quite fraught there - the daughter didn't want the patient to die in the home, and the patient was living with dementia. 

“When I came away from dealing with that patient and the family, I spoke to the CQC inspector and it was actually quite humbling. She said, ‘I'm so pleased you're able to take me with you and that this came up. Because what I saw there was the heightened emotions of a family coming right down into accepting that the patient was dying, and you brought them all onto the same page’.” 

Sophia also stresses that working more closely with communities is part of the great positive change that hospices are making in terms of making services accessible to all, having acknowledged that a majority of patients they see would usually lean heavily towards people who identify as white British.

“The hospice has become about living and not dying per se - it's about living until the end of your life.”

“There's a big drive where the hospice is actually going out into communities, like the Sikh communities… and COVID really had a huge impact on hospices, but they're now opening their doors to their cafe, so it’s not just for the patients and their families. People come in from outside to use the cafe so that they can actually experience what’s going on in the hospice.”

But how did someone who spent 17 years working as a hairdresser make the decision to retrain as a health care professional? It’s another example of Sophia’s determination and compassion that has driven her to help others.

“Hairdressing for me was socialising and getting paid for it. But it wasn’t enough for me - my husband and I had unsuccessfully gone through infertility treatment and didn’t want to adopt. So I felt that I needed to do something, and started a midwifery access course. One of the girls on it said why didn’t I do the nursing course first, in case midwifery didn’t work out, and it was the best bit of advice, because I never ended up pursuing that at all.

“At our 25th wedding anniversary party, we had lots of healthcare professionals there…and one consultant said to my sister-in-law, ‘I've met a lot of nurses, I've met a lot of healthcare professionals, but that one really gets dying'. And that stayed in my head." 

“Dying was easy - it was the letting go that was hard”

Sophia adds that whilst talking about dying does not take away the pain of grief, it does help with moving forward and learning to live life alongside the loss of a loved one. She shares a final reflection from her time working with patients at the end of their life:

“Sitting with a lady whose husband was at end of life, she told me that the patient had said to her that ‘dying was easy - it was the letting go that was hard.’”

Thank you to Sophia Hawtin for sharing her story with Hospice UK for Hospice Care Week 2022.