Enabling quality of life in very difficult circumstances, by Kate Plant

19964730_1773600412654889_568888045_nA thought provoking guest blog, second year CYP student nurse Kate Plant shares her experiences and insights into palliative care from her DILP summer placement…


Before starting my nursing degree, I volunteered as a Sibling Support Worker at my local Children’s Hospice. So, I already had some idea about how special these places are. But it was not until I undertook my Elective Placement there that I realised how rewarding a nursing role, in the provision of Palliative Care, can be.

The first thing I noticed was the difference in pace, compared to my previous placements. I was used to dashing around on hospital wards and barely having a moment to drink. So, when I was offered a cup of tea on my first day (half an hour into my shift) I was completely taken aback. But, obviously, there were more significant differences than having the time to quench my thirst. A patient would be allocated both a nurse and a care support worker, on a 2:1 basis, due to the complexity of the patient’s needs. This 2:1 care gave nurses time to listen and understand what really matters to the patient and their family. There was no rushing around. The environment was relaxed. Families would allow a nurse and other staff members to enter their lives in very difficult circumstances and build strong relationships with them. This is where the satisfaction came in.

CYPIn addition, I have by no means observed doctors, nurses and care support workers work together as well as within palliative care. There was no division but instead, a sense of unity. This enabled a pleasant atmosphere to bloom within a setting which, stereotypically, has connotations of being constantly surrounded by upsetting situations. All staff members were part of a team, encouraging a family atmosphere so families were as comfortable and happy as possible. Staff were able to take away a families’ everyday stresses so children and their families could treasure the remaining time they have together as a family, however long this may be.

The thing that struck me the most was the parent’s enormous strength to keep a pleasant face for their terminally-ill child and their other children, in one of the hardest times they can ever face. A parent’s strength is aided through their ability to effectively plan, with help from compassionate and empathetic staff members, any wishes they have in the care their child receives before death. This includes preferred place of care, spiritual and cultural wishes and anticipatory symptom management planning.  With such a wide array of resources available at the hospice (including sensory rooms, adapted garden swings, music rooms, parent bedrooms, bereavement rooms – the list could go on and on) these wishes were almost always met.

TOGETHER_LIVES_RESIZE_800_450_90_s_c1_c_cLast year, the ‘Together for Short Lives’ charity reported a national shortage of children’s palliative care nurses which is negatively impacting on the care provided to children and families. I truly believe if other students and qualified nurses were to gain a deeper understanding and/or even experience how rewarding roles in Palliative Care can be, this could help bridge the care gap. After all, you’ll never regret making a difference in the quality of care a child or young person received, during their last moments of life.

“The doctor says I’m dying”: tough conversations about death

One of my most vivid placement memories was my first conversation with a patient about dying. One afternoon I went to check on Joan (name changed), a lady in a side room on an elderly ward. I was helping her to have a drink when she looked up and said: “the doctor says I’m dying.”

I froze. My stomach turned and my mind started racing, taken aback by a statement I felt totally unprepared to respond to. I had grown fond of Joan and to see her so distressed was upsetting. I felt a sense of panic, worried that I might say the wrong thing.

I knew from the handover that morning that Joan was receiving end of life care and from what the other nurses had said, she was deteriorating and it was unlikely that she would get any better.

Taking a deep breath, I thought back to our communication lectures which covered how to deal with difficult questions. I drew up a chair next to Joan and holding her hand, I asked some straightforward questions like ‘when did you discover that?’ and ‘how does that make you feel?’, trying my best to mask my own anxiety and appear relaxed.

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While I think I started off ok, all of a sudden I panicked; I didn’t know what to say next.  Almost without thinking, I said: “Don’t worry Joan, we’re all doing everything we can to get you better and back to your normal self.”

I immediately felt awful and her face said it all; she knew I was covering. I said it out of a desire to help Joan stay hopeful, optimistic, but in reality it sounded trite, like I was brushing her off and trying to avoid a deeper conversation. I think that it made her feel worse.

Kicking myself, I spoke to my mentor who reassured me that she too struggled with questions like those and some research when I got home that night revealed that I wasn’t alone – apparently it’s common for healthcare professionals to avoid or block difficult questions, particularly about death or dying. I suppose we like to focus on how we can ‘fix’ things and don’t want our patients to lose hope.

Looking back, I wish I’d spent more time with Joan, even just to sit quietly by her side. She may have had more questions that she wanted to ask and as a student nurse, I may not have known the answers but I could have found out on her behalf.

Honesty and courage are such important parts of nursing, especially at the end of someone’s life. Sometimes the best thing we can do is to be there; to listen, answer questions and ease fears – or just to hold someone’s hand and let them know that they are not alone.

A Day in a life of a Hospice Nurse

Today I am delighted to bring you a guest blog post from a Hospice Nurse.

After qualifying as a children’s nurse about 2 years ago I worked on a neonatal intensive care ward. Although palliative care was an integral part of the role, I felt that I wasn’t using my specialist paediatric skills so decided to apply for a nursing role at Haven House.

I was lucky enough to be successful and a few months later, I can honestly say I love my job. The encouragement from staff and the hands-on-experience has already helped me progress and develop as a nurse.

The work here varies on a day-to-day basis which makes my job really interesting. At the start of a shift all staff receive a handover from the nurses on the previous care shift. We discuss all aspects of individual care and then a lead nurse allocates each child to a nurse and one of our fantastic health care support workers. This ensures continuity of care and gives everyone a sense of security throughout the day.

Depending on the care plan we bath or shower each child in our luxurious sensory bath that has lights and music. Most of our children attend school, so if it is a weekday we ensure they are dressed, fed and ready for school by 8am. This can sometimes be a challenge but good team work and staff management helps ensure we are usually on time. Haven House has fantastic complementary therapies for children and families to benefit from such as therapeutic yoga and music therapy. When children attend these sessions we usually have the pleasure of providing day care to them as well as attending the therapy session. We also have paperwork, care plans, documentation, audits, research and meetings to attend so it soon comes round to 3:45pm again. The beeping sound of a vehicle in reverse informs us that the school bus has arrived! Each child’s detailed care plan informs staff on shift how, when and exactly what to feed them. After a snack or feed its playtime. Many of our children can’t eat solid foods so are fed through a tube in their stomach.

Next, the children have some down time. Haven House has a sensory room with an interactive floor and walls. Music and lights, sensory toys and games and books for all ages are available in the activity room. Our lovely play co-ordinator ensures there are always activities and crafts set for children to immerse themselves into, whatever the weather. We often spend time in our wonderful grounds or our cinema room – the children love this as it often gives them a feel of family time and time to develop interpersonal relationships with staff and other children. Breaks in play time have to be had when children need changing, medicines or a feed.

Dinner time can’t come soon enough and we either have food ordered in or we whip up a healthy meal ourselves for the children who can eat. After dinner we have a good tidy up and then take the children to their bedrooms to get them prepared for the evening. It’s bath time or showers for those who require them according to their care plan or based on how actively engrossed they were with their messy play and crafts during playtime! Medications are given throughout the day at specific times to each child based on their individual prescriptions.

Once the children are washed, they are dressed in their pyjamas, teeth brushed and settled into their rooms. It’s either story time or a bedtime programme to help children wind down. At 9:45pm the handover process begins again with a fresh team of staff ready for the night shift. I can honestly say it’s a complete privilege to do my job every day. Our children have complex and rare life-limiting conditions and require a great deal of care and attention. I draw my strength from the knowledge that parents and carers look after them on a daily basis without any complaints. Their strength becomes our strength and this translates into brilliant care for each child at Haven House.

Despite the long hours, intensive work and heavy case-loads; I wouldn’t exchange the job satisfaction that nursing gives me for anything else in the world.

Muryum Khan, Pediatric Nurse.