First let me introduce myself ..... I have worked in palliative care for 20 years and have been with the Lawrence Home Nursing Team for over a year. These are my own experiences and observations, but I hope that they reflect the views of other members of the team.
I didn’t know too much about Lawrence Home Nursing prior to becoming a member of the team.
I knew that it was the incredible legacy left by Dr Martin Lawrence and driven forward by his family, friends and colleagues.
What I knew about the Lawrence Home Nursing Team as a hospice nurse was that when we tried to arrange complex and speedy discharges we prayed that the patient lived in Chipping Norton! If they did, we breathed a huge sigh of relief because we knew that however challenging the task, Jenny and the Team would do everything they could to support the patient and their family.
So now I find myself a member of this special team, and very happy I am too.
As with any role in an Organisation, I guess we don’t really understand the challenges or the satisfaction it can give unless we DO the job, or have it described in some depth. At this moment I know little about being a trustee or fundraiser but I am becoming increasingly aware of the enormity of Jenny and Katrina’s roles.
Caring for my first patient gave me real insight into value and unique nature of the Lawrence Home Nursing Team. After a very short illness the patient in question had been given an unexpected and very short prognosis. He had almost immediately discharged himself from hospital, such was his desire to be at home. No care was available and it was going to take a few days to arrange carers and get equipment into his home.
As so often happens, the Lawrence Home Nursing Team were able to step in at very short notice to ensure his safety and comfort overnight. He was thrilled to be at home in his own bed, with all of his belongings around him. He told me about his life, his family and his thoughts about his illness and his impending death. Although he seemed quite calm, he wasn’t sleeping very well. He asked if I would massage his feet, which sent him off to sleep almost instantaneously. Every time I stopped, he woke up - so it turned into a very long foot massage! But that, I realised was the beauty of one-to-one nursing care, it can be totally patient-centred. Quite unexpectedly he died peacefully the next day in his own bed with his family beside him. From our conversations the previous night I knew that he would have felt that he had a very good death. It was a privilege as a Lawrence Home nurse to play a small part in that.
Ideally we give our availability to Jenny and Katrina a week or two in advance, but can change it should the need arise. When possible we are booked in advance, which makes organising our lives easier. But Patient and Family needs are impossible to predict and always changing, so we can get booked to do a night at short notice, or we can get cancelled at short notice.
It must be so hard for Jenny and Katrina when just as they think that everything is arranged, something changes and they have to start all over again. Obviously we will be cancelled if the patient has died, but sometimes the family may decide they can manage for a night or two, or a change of medication may control symptoms to the degree that enable the patient and family to cope. On occasions we can be told in the morning that we are not needed for a specific patient and then a new patient is referred in the afternoon, desperately needing a nurse. Although we can decline, it is difficult to do so knowing that a family are struggling.
I think that many of us find the ‘not knowing whether you are working or not’ quite difficult, but we are well aware that this is unavoidable. Of course the big advantage is that if one wants time off to be on grandparent duty, visit friends and family, enrol in a class, take a holiday………we can just declare that we are unavailable.
So off to work a night shift………Just finding the house can be a challenge in rural Oxfordshire . Not being a native of Chipping Norton I have found myself heading for villages I haven’t even heard of! For much of the year a 10pm start means finding the house in the dark. Jenny and co are brilliant at giving directions, but it can be tricky. Even my sat nav seems to get confused on occasions! A cross country trip to Swerford took me down a road that was getting narrower and narrower, appearing to threaten to become a footpath at any moment!
When I think I have found the house I frequently find myself furtively shining my torch at front doors looking for a number or house name. Before working for the Lawrence Home Nursing Team I hadn’t realised that this vital piece of information is rarely on the gate. I search for a house, with the nagging feeling that it wouldn’t be beyond the realms of possibility ……… to arrive at the wrong house and announce ‘I’ve come to look after your husband for the night’!!!
There is no such thing as a typical night for a Lawrence Nurse and you really do not have any idea what situation may await you.
Some relatives are so exhausted that after quickly showing us around, sharing info and answering our questions they can’t wait to go to bed and get some much needed sleep. I never cease to be amazed by the trust they seem to have in us ‘strangers.’ Other relatives do not rush off to bed, but take the opportunity to talk and be listened to. We may start out as strangers, but I don’t think we are viewed as such for long. Many Patients and their families/friends appreciate being listened to by someone who is empathic and compassionate but unlike family members, not emotionally involved. Many patients and relatives take comfort from being able to have open honest conversations about dying with professionals who are comfortable talking about these difficult issues. The importance of this cannot be over-estimated and hopefully little by little the ‘Dying Matters Coalition’ will make ‘death’ less of a taboo subject. I think that my family and friends are getting used to my conversations on the subject, but that’s not to say they don’t view me as a little odd!
If the patient is awake on our arrival we assess how they are feeling, both physically and emotionally and record it in their DN notes. If the patient is asleep or unconscious we ask relatives/friends if present. It is important to document this information so that other professionals can access it and use it to adjust medication, plan care and offer appropriate support.
We work in close partnership with patients, their families, GPs, Community Nurses, Community Hospitals, Hospices, the Marie Curie and Macmillan nursing services and good communication is vital.
We get excellent handovers from Jenny, Katrina and the other Relief co-ordinators prior to seeing the patients and we report back to them when we get home at around 7am. They then pass on the relevant information to other professionals involved. The information could relate to the need for possible medication review, need for a DN or GP visit, need for equipment, changes in condition that may indicate the need for an increased care package, or the family needing increased support.
Some nights can be busy, particularly if a patient has distressing symptoms such as pain, nausea or is agitated. GP’s aim to prescribe and supply ‘as needed’ injectable drugs that we can give in such circumstances. If these drugs were not in the house and there wasn’t a Lawrence Home nurse present the patient could potentially wait a considerable time for 111 to respond and a Doctor to visit the home. This is enormously stressful for patients and relatives alike and relatives often find the responsibility of deciding whether or not to call the ‘out of hours’ service very difficult.
There are nights when patients sleep all night. Sometimes this happens when they have had a run of very disturbed nights and it appears that the presence of a nurse allows them to relax in the knowledge that there is assistance and support available should they need it. Sometimes I think we can feel a little guilty if I have had a very quiet night, but enabling a person to have a really good nights sleep is actually a night well spent
Staying awake all night is clearly very important and can be more difficult if the patient is very settled. I’m sure we have our own ways of accomplishing this. My main strategies are choosing a chair that doesn’t support my head, checking on the patient very regularly (if in a different room), Sudoku, reading and snacking!
The Lawrence Home Nurses can make a huge difference towards offering patients choice as to where they want to be cared for at the end of life. I think this is really important, as at this point patients can feel that so many of their options are limited. For some patients staying at home is desperately important to them, but often they are aware that that this can be a lot to ask of their relatives. One elderly gentleman told me recently that his biggest worry was not what was happening to him, but that he was concerned that his desire to be nursed at home was putting too much strain on his wife. He felt that Lawrence Home Nursing Team night visits were making it possible for his wife to cope and therefore possible for him to remain at home. Supporting families is a huge part of our work. Relatives often push their own fears and concerns to the back of their minds when promising to care for their loved ones at home and it can be very stressful.
It is incredibly satisfying when a patient achieves his or her wish to die at home. But this is not always possible and we can sometimes experience a sense of failure if a patient ends up being admitted to hospital or hospice. But there are so many factors influencing whether or not a patient can be nursed at home; availability of family, carers, nurses, space for equipment, health of family members, whether or not the family or friends can cope, attitudes towards death and dying, support network, severity of symptoms and their response to treatment. However what we have invariably achieved is to give the patient some time at home and if necessary, help them come to terms with the need for admission if it is unavoidable.
Having not worked in the community before, looking after patients in their own homes has been a very different experience for me. I am very aware that I am a guest in THEIR home, stepping into THEIR world. I like this aspect of the work, it somehow redresses the ‘balance of power’ in the right direction. Skill and sensitivity are required when going in to nurse and support a patient and their family. Whilst wanting to give the best care possible, we have to take great care not to undermine the efforts of family and friends who have usually been doing a fantastic job in often very difficult circumstances.
Getting used to being a Lone worker has also had its challenges, but the potential risks are taken seriously by Jenny and Katrina which is very comforting. Going into a strange house, often in the dark can be unsettling. Security is variable, some people lock up as if they live in Fort Knox (me when my husband is away) others don’t bother to lock their doors at all. Anything can happen! It’s amazing how disconcerting a power cut can be in a strange house………..fortunately the patient was able to direct me to the trip switches………unfortunately that didn’t help! Driving home in the morning having been deprived of sleep can be a bit scary. When we are out at night we know that we can contact the Coordinater at any time, we text when we arrive at the house, text when we leave at 6.30 and ring to handover on our arrival home at around 7 am. It means a great deal to be supported in this way.
The greatest compliment any patient has paid me was that they felt safe when I was on duty.… I believe that is what the Lawrence Home Nursing Team offers patients and their families.