A Nurse's Journey
End of Life Doula
Hi, my name is Mandy Kazmierski. I am a qualified end of life (EoL) doula. You may have heard of birth doulas well we sit at the other end of life. We like to think of ourselves as the bookends of life! A doula is a supporter or companion who walks alongside people living with a life-limiting illness, their families and those who are important to them.
We work with people in their homes, in hospitals, hospices and care homes and are very used to working in a collaborative way with health care professionals. My role is not clinical, though I completed a two-year Diploma with Living Well Dying Well and I am a founder member of The End of Life Doula UK Association.
I never realised the training would be such a personal experience. Having been in nursing for over 40 years, gosh have I really done that long; I semi-retired and now work two days a week as a Community Matron. I love nursing and have always been drawn towards end of life care. I have experienced death in every decade since the age of ten and rather too frequently in my fifties, maybe that has something to do with the journey I have taken.
I have worked in the community for many years as a District Nurse (DN) and the last 15 as a Community Matron. I entered community nursing because I wanted to be a Macmillan nurse. I didn’t realise that as a DN you really are the key worker supporting patients and their families as they approach the end of their lives. To be allowed in at such a difficult and emotional time, working closely within the person’s home, is a real privilege. It enabled me to gain a vast amount of experience in palliative and EoL care and I am forever grateful to have learnt from the many individuals and their families I have nursed over the years.
As a community matron my role is to support patients with complex long-term conditions. The role is proactive enabling a person to self-manage their conditions and prevent unnecessary hospital admissions. Over time I began to realise that my role was also a palliative one as I supported more and more extremely complex patients suffering from not just one but several long-term conditions. These patients were approaching the end of their lives, yet this was rarely recognised by the many services they encountered. Little was done to support them to have the best lives they can until the end.
In 2013 I completed my MSc in advanced practice my research project was around do not attempt cardio-pulmonary resuscitation decision making and advance care planning. If you’re interested, you can read it here: Kazmierski, M., & King, N. (2015). Role of the community matron in advance care planning and 'do not attempt CPR' decision-making: a qualitative study. British journal of community nursing, 20 1, 19-24 . [PDF]
My work led me to reading about EoL doulas, but the training was in Orlando America. A few months later I was assisting with Dying Matters week and had the opportunity to listen to a talk by the wonderful Mary Clear; my first introduction to the nationally acclaimed work of ‘Pushing Up Daisies’. I can honestly say that the past couple of years have been truly rewarding. I have met some amazingly talented people from all walks of life. Personally, I have had to go deep within, re-think some of my training, unravel my thought processes, acknowledge that some of the things I may have done were not truly person centred or rather they were limited within the constraints of working within the NHS.
I am passionate about opening conversations around advance care planning for end of life. Ensuring those patients with long-term conditions are recognised as approaching the last years of their lives. To help them initiate conversations with their partners/families/friends to ensure that their wishes are known. Where they want to be cared for; by who; what they want and don’t want; exploring the risk/ benefits of resuscitation; what is important to them and what they may want to happen to them after their death. These conversations are not always easy but as a society we need to accept that death is a normal part of life. That there is not a medical solution to death.
The population is aging, we are now more likely to die of frailty often suffering from one or more long-term condition. I know that the hospital is not the best place to die yet that is the place many people do. Last year my hospital Trust trained a handful of volunteers to become EoL Companions; to sit with those who have no family or few people to sit with them and hold vigil in their last few days/hours of life. It has given me an opportunity to develop my doula skills, to hold that space. As a trained doula though I felt I could offer so much more.
Like supporting the families holding vigil, or those patients not in the very end stage who need/want to talk. Or just have someone sit with them. I heard of a traumatic EoL experience from a friend whose dad had died in hospital. I listened to his Mum recall such a heart wrenching story where many opportunities were missed to ensure her husband’s wishes were known and the family were supported. It felt like a defining moment I needed to do more.
So, as far as I know I am the first doula (I volunteer one day a week) to work in a hospital setting in England. It is not my comfort zone (I’ve worked in community for 30 years) and I have purposely chosen this area so that I can focus on the doula role and leave the clinical role to the hospital team. I have been fortunate to have been received in a positive way. It’s taken several months, and I appreciate the help I received from EoL Doula UK and the Chaplaincy in moving this forward, especially within the constraints of the slow-moving cogwheel of the NHS.
My role is to provide a compassionate presence, to support, advise and provide some stability. I am there to listen, to have conversations so death may be approached without fear. I hope within the busy hospital environment to help people feel safer and more at peace with death and dying giving guidance, confidence and support in any way it is needed.
Over the past year I have supported over 100 patients and their families. I’ve supported patients who have been given a terminal diagnosis, listened to the gentleman whose wife of 60 years died whilst he was in hospital. I have supported families holding vigil, the lady who was exhausted after four days of sleeping on a hospital Z bed waiting for her mum to die. She had laid in bed with her, given her permission to go and opened the window for her soul to fly. I asked if she would like a break and I would sit with her mum. I warned her that her mum may choose that time to go, she was fine with that.
I sat with her mum and gently wiped the dry saliva from her face. After a while I noticed a very subtle change in her colour and breathing just as her daughter came back into the room. She gave her mother a big hug as she expired two more breaths and died peacefully in her arms. The daughter turned, gave me an almighty hug and said, “Thank you for being here with me.”
But I would like to tell you the story of Dougie and Molly. Yes, they are their real names Dougie insisted they were used. Molly suffered a severe stroke several years ago. She was admitted to hospital and fast-tracked home to die but she rallied with the lovely care of Dougie. Inevitably, a few months later she deteriorated and was readmitted. The ward staff were arranging to get her home to die when they asked me to see Dougie as he was struggling to cope. I met him as he came up to the nurse’s station to ask for more pain relief for her. I introduced myself and together we went to her bedside.
As I went through the curtains Molly was laid against her pillows in bed; her eyes were closed; she was sweating; her breathing laboured and ruttley; her heart racing, her carotid bouncing in her neck and there was a perfect halo of sweat on her pillow. I gently touched her hand and said, “Molly, my name is Mandy and I am an EoL doula here to support you and Dougie.”
Dougie started to tell me that they found cancer in her tummy and chest and he couldn’t understand why they weren’t giving her chemo. I gently put my hand on his shoulder and said “Dougie, Molly’s dying, were you wanting to get her home?” “Oh no no, I am a softie I couldn’t cope with that. Her bed is in the dining room and I don’t want that memory.” “That’s perfectly ok we can care for you both here,” I replied. I asked if I could call anyone for him. Dougie told me that their only daughter of 44 years died in March from a brain tumour. Oh my goodness no wonder he was struggling.
Just before the nurse came to give an injection Molly lifted her head off the pillow her eyes opened and rolled backwards, closed and she laid back. I turned to Dougie and said, “Dougie Molly’s dying, right now. If there’s anything you want to say you need to say it now.” He gently picked up her hand between his and started to quietly sob, I put my arm around him and just held him.
He said, “she’s still breathing.” I explained it is her body expelling the air as it gently shuts down and can last several minutes which it did. Eventually he asked what happens next? I said that the Dr would come and verify Molly’s death when he was ready. I asked if he would like me to tell the lady’s in the room, “Oh yes, they all liked Molly.”
I went out from behind the curtains, the three ladies in the bay were all visibly upset but thanked me for being honest with them. I then went to make the obligatory cup of tea. When I came back the lady from the opposite bed was behind the curtain holding Molly’s hand and chatting to Dougie. I thought, how bloody marvellous; humanity at its best!
On leaving the ward I asked the staff if they would see if the lady’s in the room wanted their curtains closing or not when they came to take Molly’s body away and as a team if they could perhaps pause to acknowledge Molly’s life ending. The practice of closing curtains and hiding life’s most natural event hasn’t changed in over 40 years, if we can’t normalise death in hospital how can we expect the general public to begin to be at ease with it.
Maybe just maybe we can start to do death and dying a little differently. We need to start conversations early, those with life-limiting illness have a right to good palliative care to ensure in their last years of life they are well supported and listened to. My local hospital is initiating advance care planning, but this is often during a crisis admission. These conversations need to start so much earlier. There are so many opportunities where they can and should be initiated.
Health and social care cannot achieve this alone and we need to develop compassionate communities to support people as they age. As Professor Allan Kellehear states, “The larger part of dying happens outside of the institution and professional care.” The emergence of the doula role is not only to support the individual and their families it’s to bring dying ‘home’ in our communities. We believe it is all our business and not the sole preserve of experts and professionals.