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Hearing about others' experiences can be helpful when dealing with death and bereavement. Do you have a personal experience that you'd feel comfortable sharing with the campaign? If so, let us know...
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My husband Bill died in the Royal Bournemouth and Christchurch Hospital in August 2008.
He had been diagnosed with emphysema and fibrosis of the lungs in the autumn of the previous year, and was being treated at the Royal Brompton Hospital in London.
His prognosis was not good but we embarked on the cocktail of steroids and 16 hours of oxygen a day with optimism in May. The oxygen service provided by the NHS was superb. The condenser system was installed by caring, articulate and professional staff who were at pains to assure us that help was at hand within four hours if required. A telephone helpline was consistently manned by staff who never made us feel we were asking elementary questions.
Bill had had vascular disease since the early 1990s, an abdominal aneurism that was regularly monitored, and various other non life-threatening conditions all of which were being treated by various doctors, some through private care and some within the NHS. We were familiar with hospital regimes and were more, or in some cases, less impressed by the commitment of the staff to put the patient first. As a long time employee of Marie Curie Cancer Care, my antennae for the personalisation of services were very sensitive as palliative care by its very nature must have this as its starting point.
We were at home in rural Dorset when my husband woke at 4am with a cold leg. After waiting a while to see if the problem rectified itself, we called an ambulance at 5.30am. Within ten minutes it had arrived. The challenge of the spiral staircase and a patient who could not hear well or control his limbs was managed discreetly, and I was given time to collect my husband's things for the hospital stay with helpful suggestions made as to what he might need. The 40-minute journey was not wasted: an ECG was taken along with various other tests to provide the hospital with information that would assist in diagnosis and care planning.
We were taken to Poole Hospital Accident and Emergency Department where it was decided we should be transferred to Bournemouth, where the expertise was available within the Vascular Department to deal with my husband’s condition. In Poole we were kept informed about what was happening and why, and the staff were consistently friendly and reassuring. On arrival at Bournemouth we were met at the hospital by my sister, who stayed with me for the next few days.
Bill was examined by the vascular consultant and a registrar for the respiratory department. My husband had a thrombosis in his leg which needed urgent investigation under local anaesthetic, but the state of his lungs meant that agreement was necessary between the two disciplines and the risks weighed up. We were consulted and the problem carefully explained. Unsurprisingly, we were concerned that the doctors who had managed Bill's care in London should be asked for their view. Without making us feel difficult or demanding, a call was made and we were reassured we should go ahead. The respiratory consultant also spoke to our London consultant, so we knew he was familiar with my husband’s history.
The student nurse who prepared my husband for surgery was friendly and competent. He made conversation as he passed by in what was clearly a very busy ward, and again we were made to feel comfortable.
My husband was admitted to the High Dependency Unit after the procedure. There was one other patient in the seven-bed ward. It was explained to us that my husband could remain there over the next few critical days unless there was a major accident or incident, in which case we would need to move to the respiratory ward. The vascular surgeon explained that he had been conservative in his treatment as Bill’s general condition, and the fragility of his lungs, meant that extensive invasive procedures were not appropriate. The consultation and collaboration between the two disciplines was detailed and evident throughout the four days we were there.
It was only when my husband was comfortably installed in his bed by consistently caring, communicative and professional staff that I became aware of our surroundings. The hospital, built in the 1980s, is spread over an extensive site with ample affordable parking (well, that was our experience over the four days), beautifully maintained grounds with a lake and seating areas, and restaurant and coffee shop facilities that served meals almost around the clock. The shop opened early and stayed open late and clearly a great deal of thought had gone into what was sold to support both patients and families while their lives revolved around the hospital. Everything was so well maintained and clean. The design - windows and as much natural light as possible - meant patients were conscious of their surroundings. The tentacles of the wards led into wide corridors, and the atrium entrance reflected the atmosphere we try to create in our hospice buildings, but on a much larger scale.
When it became clear that my husband’s condition was grave, I told the rest of the family – there were over a dozen of us at one time – that they should come to the hospital. We were told we could use mobile phones in the main corridors but not in the ward areas. This meant that we could be in touch with one another while knowing we were not missing a critical visit from a member of staff.
I was offered a high stool which enabled me to be close to my husband’s face when we talked through his CPAP (a mask that forces oxygen into the lungs) while keeping his bed at a safe height for the continuous nursing he was receiving. The nurses and ward staff were constantly busy, and used the opportunity of a relatively quiet ward to do discreet training on the equipment, cleaning of the ward and online learning. The atmosphere was friendly and the staff consistently so kind.
Bill had little interest in food. He was offered anything that might tempt him, but he wasn’t pressured to eat. Staff were happy to refrigerate anything I brought in that he might enjoy. We were told when we arrived at the HDU that the next three days would be critical. On the third day it was evident that he could never come home: the antibiotics were not controlling the disease and his oxygen levels were falling daily. We talked to the respiratory consultant about the way my husband’s death could be managed to minimise the physical distress that is so often associated with COPD.
Early on the day he died, I arrived at the hospital to find my husband comfortable. He had been placed on an airbed, which kept him in a comfortable semi-reclining position. The night staff had moved his bed closer to their desk as they rightly thought he would be happier close to activity. They had telephoned me to tell me they had done so I would not be concerned when I arrived in the early morning. I was told I could telephone the ward at any time. My husband needed rest and the staff were happy for me to sit in the waiting area at any time so he always knew how close I was when they didn’t want visitors in the ward, but most of the time I was by his bed, helping with the nursing and being allowed to continue to care and support him as I have done for many years.
Having witnessed the quality of care provided in hospices over many years, and delighted in the empathy shown by the specially trained staff we employ, I was so grateful to receive the identical support and care within this busy NHS hospital. The shift from active to palliative care was considered and perfectly timed to minimise distress for my husband and freedom for the family to adjust to the reality of his death. I was supported by the medical and nursing staff through telephone and face-to-face contact for the few days we were there, and above all I was with my husband at the end of his life. There is nothing I would wish to have been done differently.
As I grow used to life on my own the incomparable gift I received from the hospital of their unfailing compassion and professionalism sustains me tremendously. I am so grateful to them all.
On reflection it is not about where you die but how you die that makes it more or less manageable to those left living. In the past, hospice care has focused primarily on cancer patients who in many cases are aware that their illness is life-limiting. Choices are increasingly available through the collaborations between agencies to enable families to be where they want to be when the patient dies. We had no choice but neither my husband nor I would have wanted to be anywhere else. I would like to celebrate the service that enabled us to end our time together so gently and well.
Kate Cotton, Specialist Projects Leader for Marie Curie Cancer Care.
The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
Freephone 08000 21 44 66