ReSPECTing people’s health wishes
Dr Graham Stiff on the importance of communicating your preferences
THE husband of a patient of mine died about a year ago on Valentine’s Day.
He was much loved and the impact of his death still affects his family, particularly his wife, who is a young grandmother.
I may be wrong, but as an outsider I have the impression that he did not speak much about his illness. (This might have been perhaps as a defensive mechanism or perhaps to ‘protect’ those around him.)
He had a rare form of cancer which had been diagnosed about three years earlier.
He lived well with it and his final illness was much more rapid than his family were expecting.
He resisted going into a hospice because he believed that it would mean that he was ‘giving up’.
This was a shame, as specialist palliative units can in fact very positively help with symptom control and help people to continue to ‘live well’.
Palliative care – looking after symptoms – is a branch of medicine that is useful at many stages of a life-limiting illness and is not just limited to end of life care.
His final illness was upsetting as he was initially looked after on a general ward in a large hospital and it was a ‘struggle’ to get him moved and cared for in a specialist palliative care unit.
Once there, however, a lot of the stress and pain was relieved and as far as he could be, he died in a supportive environment with people who understood and provided care.
His wife was bereft.
The Swiss-American psychiatrist Elisabeth Kubler-Ross’ life work was focused on bereavement.
She wrote “The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it.
“You will heal, and you will rebuild yourself around the loss you have suffered.
“You will be whole again, but you will never be the same. Nor should you be the same, nor would you want to.”
His wife is still going through this rebuilding process.
As part of this process she and I talked about the importance of communication.
Talking about wishes and worries with family friends and medical staff can be very important so that decisions could be made in good time without rush and without the sorts of difficulties that her family had experienced.
We all of us find it difficult to start these sorts of conversations – doctors, patients and family members.
Most of us, however, are happy to talk things through if the subject is brought up. Having these sorts of discussions at an early stage makes it a lot easier to get help when we need it.
Help exists, from advice and support at the general practice level right the way up to consultant co-ordinated care. This can be provided at home and in a hospital or hospice setting.
The major challenge is in the thinking about when and how to access these services.
In our area, most of the palliative care is provided by the primary care team of general practitioners and district nurses.
Specialist community palliative care is provided by the nurses and consultants from the Sue Ryder organisation.
If needed, both primary care and community teams have access to beds at the West Berkshire Community Hospital.
It is important to keep notes about your wishes so that they can be followed when you might be unwell. We call these sorts of notes ‘care plans’.
ReSPECT is coming to help
Over the course of the next year or so a lot of us will be using some new ‘paperwork’ to document this information.
ReSPECT (Recommended Summary Emergency Care Plan) is a process that creates personalised recommendations for a person’s clinical care in a future emergency when they may not be able to make or express choices.
It provides other people responding to that emergency with a summary of recommendations to help them to make immediate decisions about that person’s care and treatment.
With or without this process, thinking ahead is really important to try to avoid a crisis being made worse by things happening that you may or may not want to happen.
Knowing about services and talking about wishes and needs at an early stage of an illness is vitally important and care plans can not only help with care but can be a relief for people so that everyone knows what to expect.
Palliative care in Newbury
So, what about Newbury? Provision of care locally has ‘traditionally’ been good, but has improved even further over the years.
When I first arrived in Newbury in 1996, good palliative care provision was being actively supported by the Newbury Cancer Care Trust, which provided equipment to help local general practices and district nurses to give care in patients’ homes.
The sort of equipment they provided is now appropriately provided by the NHS as a normality.
The trust still plays a vital role with individual patients care, but has also have provided funding for the equipping and ongoing maintenance of the palliative care Rainbow Room beds at the West Berkshire Community Hospital.
Recently, the trust has been a pivotal part in raising money for The Rosemary Appeal to help finance the building of a new dialysis and treatment centre that will provide services locally and prevent the need for patients to travel relatively long distances for care.
The community hospital not only has beds for patients with end-of-life needs, but also provides a base for specialist community palliative care nurses and outpatient facilities for a palliative care consultant who can see patients at the hospital, on the day unit or in patients’ homes.
Help exists, from advice and support at the general practice level right the way up to consultant co-ordinated care.
The major challenge is in the thinking about when and how to access these services.
