Lynn Mitchell has COPD. Here she explains the contrast in her experience of hospice and hospital nursing care.
Since the age of one I’ve been asthmatic. I also have COPD, bronchiectasis and angina. I’m in a wheelchair and need oxygen. I haven’t been able to access palliative care on the NHS, in fact one consultant told me it’s because it will take me too long to die.
But I’ve had help from my local, charity-funded hospice. They offer respite care, so over the years I’ve spent anything from a day visit to a two-week stay there. The one-to-one nursing care at the hospice is lovely. Nothing is too much trouble for them. They make sure you keep your dignity and safeguard your privacy. I was worried about being naked in front of them when I was having a bath so they gave me a small towel to cover myself up a bit, to save me from feeling embarrassed. Nurses at the hospice never talk down to you. They treat you like equals, never rush you and make time to chat with you. And they say it’s ok to cry and to be angry about your condition.
This care is different to some of the other nursing support I’ve had in hospital. There I’ve been made to feel like a number, not like a person. Sometimes nurses have left me in tears because the way they talked to me made me feel a pain and a nuisance.
One time when I was admitted to A&E because my oxygen levels were low I was placed in a side room that stank of pee and didn’t even see a nurse. On another occasion I was in a mixed admissions ward where a man kept exposing himself. I was really embarrassed and wanted the curtains pulled around me, but the nurses said they weren’t allowed to do this. In the end I was so distressed I discharged myself from hospital. I couldn’t stand the way I was treated. I would rather die, with my family around me, than go back there.
I don’t blame the nurses in hospital – it’s not that they want to be horrible to patients, it’s that they just don’t have the time to reassure us. It’s the system that stinks. But the nurses at the hospice have the time to listen to patients, to answer our questions and help us when we’re down. They hold our hands and give us hugs.
We need more nurses in secondary care and we need more of them to be trained in palliative care. I’d like nurses to treat patients the way they’d like their parents to treat them if they weren’t well. And that means respecting our dignity and making us feel safe.
The End of Life Care Strategy (2008) applies to patients with chronic illness, including COPD. One vital principle included in the strategy is for patients to be treated as individuals, with dignity and respect. Important aspects featured in the strategy include identifying people approaching the end of life, initiating discussions about preferences for end of life care and agreeing a care plan to reflect those discussions. The strategy also looks at delivering quality services in all locations, managing the last days of life, care after death, and support for carers. This is a tall order, particularly in secondary care where nurses are trying to meet management needs, reduce A&E waits and improve efficiency.
And yet, most nurses enter the profession with altruistic feelings of compassion and care. What has happened? Clearly the description of care this COPD patient is experiencing in secondary care is appalling and not to be tolerated. Basic dignity, care, understanding, sympathy and a kind word or gesture can go a long way to making patients feel safe, valued and supported. It does not take much.
The disease trajectory in COPD is uncertain and many patients will experience a slow decline interspersed with frequent exacerbations requiring emergency admission to hospital, often with non-invasive ventilation. Many adapt, cope and manage. But nurses must be able to recognise when patients are struggling physically, psychologically and emotionally. They need to learn how to listen and pick up cues, initiate difficult conversations, prioritise what is really important in the ward, and deliver patient-centered care irrespective of hospital or ward targets. And they need to learn lessons from hospice care and apply them to patients with advancing COPD.
- All patients should be given privacy, treated with dignity and respect and their wishes explored.
- Every patient’s needs are different. Take time to talk to patients to understand their fears and anxieties and listen to their concerns. Distressed patients can often work out their own solutions to problems, but just need someone to talk to who will listen to them.
- Improve your communication skills. Talk confidently with your patients on difficult subjects. Learn from models of care developed for cancer, and apply them to patients with chronic advancing disease.
ARNS have developed a course for clinicians who are managing patients with advancing COPD. www.arns.co.uk/Courses
The British Lung Foundation, the only charity supporting everyone affected by lung disease, provides an online breath test for people who are worried that they might be at risk of COPD. To take the test and to find out more about lung disease visit www.lunguk.org or call the BLF helpline on 08458 50 50 20.
Annette Duck is insterstitial lung disease specialist nurse, University Hospital of South Manchester Foundation Trust and chair, Association of Respiratory Nurse Specialists