Chronic obstructive pulmonary disease affects the lives of 3.7 million people in the UK. It is predicted to be the third biggest cause of death by 2020, with around 30,000 people dying from the disease every year.
It is vital that we change the mindset of people today who believe that death should be a topic brushed under the carpet. British Lung Foundation research has shown that one in five people with a terminal lung disease have not had a conversation about end of life care, but wanted to.
Sadly, end of life care for people with COPD doesn’t match that available for patients with cancer. I have heard of cases where patients have said they were dying from the “wrong” disease, because of the lack of palliative care support compared with cancer. Everyone has the right to be able to choose how they want to spend their final hours, no matter what the condition.
‘British Lung Foundation research has shown that one in five people with a terminal lung disease have not had a conversation about end of life care, but wanted to’
Here at the BLF, we feel strongly that patients with COPD should receive the highest standards of care possible. Unlike many terminal diseases, COPD is a long term condition, so there really is no excuse for patients not to receive help and advice around palliative care.
In the forthcoming national clinical COPD strategy, which we are eagerly awaiting from the Department of Health, guidelines are set out for end of life care.
The strategy will set out the current situation, which is that despite their prognosis and morbidity rate, patients with COPD have far less palliative care input than those with lung cancer.
I am confident that the strategy will enable a care pathway to be established that will ensure patients with COPD receive the same end of life care as patients with cancer.
And we need it to be published so that all healthcare professionals can organise care around it.
There are two main reasons why patients with COPD have fallen short of receiving the palliative care that they are entitled to.
The first is the difficulty of giving an accurate prognosis and the second is that specialist palliative care services have only recently started to become focused on the needs of people with conditions other than cancer.
We want patients with COPD to be able to access a full and extensive self management plan as part of their overall care plan and to be able to have a say in the type of care they receive.
Patients and carers may want to discuss: making a will; where they want to die; the possibility of a lung transplant; or funeral arrangements; and we want to make sure this process is as easy as possible for them.
People with COPD fluctuate from feeling well to taking a turn for the worse over a long period of time, so patients and carers need to have the time to consider these issues and set out their wishes.
Carers are frequently left out of discussions yet live with the uncertainty that COPD provides.
Support for carers is another area that I feel strongly about. At present no formal model of support exists for the main carer or those who are bereaved. We want to see measures taken to include their wellbeing in end of life care provision. Research shows that surveying the views of relatives on the quality of care given to their loved one provides a valid proxy measure in an area where it is difficult to get feedback directly from patients themselves.
In terms of how palliative care is delivered, there is a real problem with the lack of nursing support services available, which, in turn, causes a major issue when trying to fulfil a patient’s wish to die at home.
The BLF has 49 specialist nurses trained in palliative care. Our nurses have said how valuable patients find their help, often with the things like asking “what’s going to happen in the future?” or “what can I do when I become breathless?”
BLF nurses are able to offer this personalised care in addition to carrying out their medical role in taking blood pressure and checking oxygen levels and respiratory rate. The majority of our nurses are also prescribers and can write prescriptions for some of the medication without the patient having to visit their GP. Again, this makes the whole process more efficient and less stressful for the patient with COPD and their family.
What is being suggested is pretty basic. There is no valid reason why patients should not get access to this type of care. I also believe that patients with COPD should be able to access hospices, pain control and many other areas of help that are offered to patients with cancer.
I can only hope that the government will publish the national clinical COPD strategy soon and we will be able to make headway in delivering a service that COPD patients deserve. It is over five years since it was started. How long do people with COPD have to wait before they get support both to live well and die in a manner that indicates they are not second class citizens?
Dame Helena Shovelton is chief executive of the British Lung Foundation
- For more information about the British Lung Foundation, go to www.lunguk.org or call 0845 850 5020