Hospice care at home blog

Hospice care at home

Justine is a clinical nurse specialist on our community team and provides care to patients at home. She tells us why she joined Martlets and explains what she finds challenging and rewarding about her role.

“After 12 years of working on a hospital intensive care unit, I realised I wanted more time with patients. More time to listen, to explore their understanding of their condition, and to discuss their hopes and wishes. I was no stranger to life and death situations; to supporting families whose loved ones had experienced physical trauma or complex conditions. Often, patients’ lives were hanging in the balance for days and families never knew when, or if, their loved one would recover. Those years made me realise that sometimes acute interventions are no longer the answer. But when there is no hope for recovery, there is still meaning to be found in the time that is left.

With this in mind, I decided to join the clinical team at Martlets – my local hospice. I now work as a clinical nurse specialist and visit patients at home in their last weeks and months of life. My job also entails providing phone support and advice as well as liaising with GPs and other specialist teams. Often, people don’t realise that 80% of the care Martlets provides happens out in the community. We help people to live well and to die peacefully in the comfort and familiarity of their own homes.

‘There is a limit to what hospital treatment can offer at the end of life in terms of clinical care and emotional wellbeing. That’s why local hospice care is so important.’

For most patients, there comes a time towards the end of their lives when the positives of having hospital treatment for their illness may be outweighed by the debilitating side effects. For example, the side effects of chemotherapy such as nausea, vomiting and fatigue can be extremely challenging.  Once cancer is in the terminal stage, patients say they feel as though their life is being controlled by the treatment. And the hospital visits and the hours of waiting. They feel disempowered by that and want to fully inhabit the days and weeks of life they have left.

One lady I looked after had hypercalcaemia (an abnormally raised calcium level) which is common with advanced cancer. She had been going into hospital three or four times a week for intravenous fluids to stabilise her condition. Sometimes she would have to be in there from 8am to 8pm. She was thinking ‘do I really want to spend my birthday in hospital on an IV drip?’ It was a difficult balance to strike as the hypercalcaemia can cause confusion and constipation if left untreated. This is where Martlets’ community team can get involved to support this transition from hospital treatment to hospice care at home.

With our support, patients can reflect on their quality of life and that starts to take precedence. We can help them make decisions about their care and treatment, and also support them in an emotional sense too. It may be that they have a birthday or a special family occasion coming up; we can manage their medications with that in mind. Pain relief is also something we can provide for patients, and we can control symptoms such as nausea and vomiting. We do all we can to prevent hospital re-admissions and to manage patients’ care at home.

‘Hospice care isn’t only about last days and weeks. We offer support as soon as someone is diagnosed with a terminal illness so they can live well for longer.’

As well as clinical care, Martlets provides psychological and spiritual support, wellbeing therapies, social groups, and the Compassionate Neighbours scheme. Hospices have a unique approach to care that is patient-centred. We meet people wherever they are physically and emotionally on their journey and focus on their individual needs.

As a team, we understand that people need time to absorb information; time to adjust to what life has dealt them. As palliative care professionals, we acknowledge that suffering, loss, anxiety, anger, and sadness are a common part of the process. But we try to alleviate these difficult feelings by offering compassion, understanding and even hope. People can have specific hopes, aims and aspirations towards the end of life. Whether it’s the possibility of being in less pain, finishing a book they’ve always wanted to read, or attending their daughter’s wedding. We take the time to find out what is important to every person. And do our very best to make that happen.

‘It’s challenging work, but we’re a great team and that makes all the difference.’

Obviously, with the pandemic, it’s been really difficult in so many ways. For some people, their hospital treatments have been delayed and continuity of care has been affected. I know patients who stopped having chemotherapy for a few weeks because they were worried about getting COVID. And it’s been harder to connect with patients when we’re all wearing PPE as they can’t see our facial expressions.

Throughout the pandemic, the community team has continued to make home visits to those who need us most. Our top priority has been to keep our vulnerable patients safe and COVID-free, so we are taking extra precautions. Where possible, we have reduced direct contact and carried out patient assessments over the phone instead of making visits. This can feel more impersonal, but it is important to ensure everyone’s safety.

We’re a great team and have got each other through, and we have a diverse skillset. One colleague is passionate about ensuring the homeless in our city have access to hospice care. I have a background in brain tumours and trauma, and another colleague deals specifically with Motor Neurone Disease. It’s this knowledge base and teamwork that helps get us through challenging times.

‘Building meaningful relationships with patients and families is what gets me out of bed in the morning.’

The most rewarding aspect of my job is interaction with patients and having the time to really listen to them. Often, in quite a short time, we build a rapport and a level of trust; it is a privilege to feel that. Patients will talk to me about the most fundamental things in life; pain, regrets, spiritual beliefs, existential dilemmas – their hopes and fears. I try to be really present and to understand what they actually want and need, rather than speculating. Along with the clinical side, just listening – fully, without judgement – is probably the most fundamental aspect of my role.

Just before the pandemic, I went to see a patient who was an asylum seeker. He was living alone in a council flat and finding it increasingly difficult to look after himself; he had a terminal brain tumour and had no family or friends to support him. We often come across people who are so desperately lonely. My colleague and I helped him from a clinical perspective with pain management. But he also appreciated the small things we did. I put the kettle on, cleaned up, washed his clothes and just tried to give him some comfort and dignity back.

Eventually, he was admitted to Martlets, as he was deteriorating and needed inpatient care. I went to see him on our inpatient unit shortly before he died. He told me that just to have people around who were kind to him made such a difference. The connection I had with him, he said, and the kindness he was shown had made these last weeks the best time of his life for many decades. The last thing he did was kiss my hand. Even thinking about that now makes me emotional. But it is these small, powerful connections that make this job so rewarding.”

This year, the work of our Community Clinical Nurse Specialists is being supported by a grant shared between Sussex Hospices. The £100,000 grant has been awarded by NHS Charities Together, via the Heads On Charity to help provide end-of-life care for people in their own homes. Read more about the grant here.

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