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Nobody likes to talk about dying. But for Lorraine, death has become a part of her everyday life.
7th June 2017
Questions by Ruth Underdown. Answers by Lorraine Gardiner
Palliative Care is the term given to the care you and your family receive when coping with a terminal illness. It not only involves managing the condition, but provides psychological, social and spiritual support to ensure the best quality of life for patients and their families.
Today, we explore the effects Palliative Care has on those that help us live with terminal conditions.
In the interview below we talk with Lorraine Gardiner about her job as a Palliative Care nurse. She discusses the challenges and the skills she has needed in the role.
Lorraine is a highly experience nurse and has worked in Palliative Care for over 10 years. We’d like to thank her for sharing her experiences.
Read on to explore the effects Palliative Care can have on those that help us live with terminal conditions.
1) What is your background and what led you to becoming a Palliative Care specialist nurse?
I studied Adult Nursing at Anglia Polytechnic University and qualified in May 1998 as a Registered Nurse.
I started in Trauma Orthopaedics, with the goal to work in a Trauma Resus Team, and then moved to the Royal National Orthopaedic hospital specialising in Spinal Cord Injuries. From there, I became a ward manager of a tissue Viability Ward at the hospital covering all complex orthopaedic conditions and trauma. This is where my interest in Palliative Care started as I cared for many patients with various types of cancers.
I moved into the community and worked for many years as a community matron in long term conditions, again satisfying my interest in Palliative Care. I knew I would be fine caring for older patients with a Palliative diagnosis, but I was unsure about younger patients and how I would feel looking after someone the same age as me. I took a bank band 5 position at the local hospice to gain a better understanding and see how I would manage. Although it was hard, I knew it was exactly what I wanted to do! I was then lucky enough obtain a Macmillan Palliative Nurse Specialist position and upon starting I knew I’d found exactly where I wanted to be.
I now develop admission avoidance services and Palliative Care/End of Life Care is key as it’s about keeping patients out of hospital, and finding the right people to care for them. We also help to educate Care Home staff on Palliative Care and Dying, identify to GP’s when patients are deteriorating and speak to families of those who have taken a sudden dip in their condition.
I am passionate about Palliative Nursing and feel that being a Palliative Care Nurse is a very privileged position.
2) What qualifications and additional training did you undertake to become a specialist nurse?
I did my degree in Nursing Practice, Independent Nurse Prescribing course, Advanced Communication Skills, Coronary Heart Disease Modules, Research modules, and lots of in house training around different types of cancers. I also shadowed other specialists to gain more information and insight.
3) What skills would you say are essential to being an exceptional Palliative Care nurse?
Don’t go in thinking that you’ll be wonder woman. Be open minded and listen. It’s OK if you don’t have all the answers. You must be a great communicator and understand it’s OK to have pauses and silence in conversation. This is mainly what the role entails and what your patients and their families want. Individualise everything you do, realise this is not text book nursing and every patient will need different things from you.
Be patient, calm, non-judgemental, compassionate, knowledgeable, and understanding. Have broad shoulders, show your emotions (at times), and mostly, probably most importantly, be real.
4) How do you see Palliative Care progressing in the next few years, especially with the incoming changes in the NHS and increasing shortage of nurses?
Tough question. I would like to see Palliative Care given the funding and resources that it needs with every professional really educated in Palliative care, especially End of Life care.
I believe more Palliative and End of Life Nursing is entering the Community, and I firmly believe that this is where it should be. Better care happens in the community and patients have more control.
The shortages of nurses in the NHS will have an impact, which is why we need to train more disciplines in Palliative Care. To me, the shortages are not just within nursing, they are across the whole of the healthcare industry.
5) Death is viewed as a distressing and difficult subject to discuss. How have you managed your own feelings in the more difficult cases you’ve dealt with?
I hug my children tighter and tell my husband I love him almost daily. I don’t take everything for granted. I do talk about what has affected me with my colleagues. I do cry, and it’s OK to cry. I’m human and some things really touch a chord as I can relate to them from personal experiences.
6) How would you describe a ‘good death?’
One where you have helped patients and family achieve their goals. Symptoms have been controlled, care has been provided, the patient is where they want to be, surrounded by the people they want near.
It’s ensuring dignity is paramount in everything you do, and your patient has control over what happens to them and been granted their wishes at every possible opportunity.
The discussions I have with patients and families are very personal, and I do consider my position privileged as I guide patients and families through the most difficult times of their lives.
A death where the family feel it went well, and the patient is at peace throughout is a ‘good’ death. But it’s also recognising that all potential possibilities were thought of beforehand, so that the family and patients are informed and know what is happening as each stage arises.
7) How have you seen things change in the time you have been practicing? Would you say this has improved care or worsened it?
I don’t think care has worsened, but it varies nationally. Some areas are far more advanced in Palliative Care and that does sadden me. When I qualified as a nurse, Palliative Care was provided in hospitals, whereas now it is increasingly provided in the community.
We are trying to move away from hospitals, and educate people that community care is better. However, unless patients wish to be at home, the options are quite restricting. Hospice’s cannot always guarantee they’re able to care for every patient who is dying that wants to be there. The closure of many Community Hospitals has impacted patient’s choices of where they wish to die.
Death and dying can be frightening, and as much as we try to prepare patients and families for it, when it comes to it, patients may change their minds. That’s ok. I would like to see more options available for patients regarding where they would like to die.
8) The Liverpool Care Pathway caused a public outcry after its inappropriate use was exposed for its failings. How do you think the public has reacted to the change in practices that have resulted?
There is still a lot of angst over the Liverpool Care Pathway and I’m frequently asked about it. The pathway itself wasn’t bad when executed properly and staff were educated how to use it effectively. Sadly, how it was utilised in some areas, and the coverage in the press, naturally resulted in some valid concerns.
I find that being open, honest and upfront with patients is the best approach. The public appear to be more open minded and are asking more questions.
9) Would you say there is still a degree of fear associated with Do Not Resuscitate orders and Advanced Care planning?
Yes! I believe this is due to professionals are not recognising the right time to have difficult conversations. This may be due to a lack of education and people being scared to open difficult conversations.
10) What would your advice be to a nurse who is interested in pursuing a career in Palliative Care?
Make sure this is really what you want to do. It’s not just about the elderly 97-year-old who is dying through old age, think about how you would feel caring for a 19-year-old just starting university. Or a 38-year-old who has a partner and 3 young children. This is the reality of Palliative nursing. Understand that family plays a huge part. It’s not just the patient you support, but those around them too.
Gain experience. Shadow professionals. Don’t just focus on Cancer, consider your Long-Term Conditions too e.g COPD, MND, PSP. Palliative Care encompasses so many conditions in very different ways.
Challenge yourself. Explore the art of communication, and reflect on how you manage very difficult and fragile situations. Explore personal development.
The role can be hugely rewarding, but can also be emotionally draining so ensure you make time for you! Recognise when your colleagues may need a cup of tea to relieve a tough day, or just a listening ear. Sometimes, that’s what makes the difference.