Death is often a taboo subject with many people reluctant to talk about the ending of life. AASMA DAY talks to a Lancashire father who has been inspired to campaign for improvements in end of life care following the death of his son.
Watching the son they loved battle in vain against the cancer which eventually claimed his life was the hardest thing that Tony and Dorothy Bonser have ever had to endure.
However, because no one actually spelt out that their 35-year-old son Neil was dying so they continued to chase cures not realising their pursuit was futile.
The couple’s regret is that they lost time with Neil which they will never get back and they are now sharing his story as part of a national awareness week designed to break down taboos around death and dying.
Tony Bonser, 68, of Hoghton, near Preston, is both a trustee and volunteer driver at St Catherine’s Hospice in Lostock Hall near Preston as well as a trustee of the National Council for Palliative Care.
He is driven forward in his work by a desire to validate the death of his son Neil.
In his role as North West Dying Matters Champion, a position he shares with wife Dorothy, who also volunteers at St Catherine’s Hospice, he is a regional representative for the Dying Matters coalition, a group which aims to change public knowledge, attitudes and behaviours towards dying, death and bereavement.
As part of this year’s Dying Matters Awareness Week, which will run from May 12 to 18, Tony is sharing his experiences to help put the spotlight on the importance of the type of quality end of life care St Catherine’s Hospice delivers and to encourage more people to speak out and share their wishes for the end of life.
Explaining the meaning behind the week’s theme this year “You only die once”, Tony says: “We only get one chance to have our dying wishes met which is why it is so vital to talk, plan and make arrangements for the end of life before it is too late.”
It was Neil’s death in March 2009 following five years battling cancer which began as a sarcoma in his thigh, which first inspired Tony and Dorothy to begin their campaigning work driven by their own family’s first-hand experiences.
Tony explains: “The medical care Neil received in this time was fantastic – there is no arguing that.
“What did go wrong was the communication between the professionals and us the family.
“So many people are scared to say ‘You’re dying’.
“Of course it is a very sensitive issue which has to be handled carefully.
“But what the doctors were saying at that time is certainly not what Neil, Dorothy or I understood.
“It meant a year before he died, we continued to chase cures when really we should have been enjoying that time.
“There were things we wanted to do, which we didn’t.
“Now we say things like ‘Neil would have loved this’ or ‘We would have taken Neil there’ and they are things we could have done if we hadn’t been so focused on the cure.
“Sadly, we will never get that time back now, but it is this experience which drives us on to get people talking and communicating properly about death, dying and wishes for the end of life, particularly those important conversations between professional and patient.
“We need to break down the barriers which exist and awareness campaigns like Dying Matters Week play an important part in this.
“The message we are keen to get across is that although ultimately you can’t avoid death, by talking about it and preparing for it you can have a better one.”
Tony, who also has a daughter Sam, says the experience of losing a son has impacted massively on their family and greatly influenced their current way of life.
“Our perspective has changed drastically since losing Neil. We now live for today, not yesterday or tomorrow or two weeks down the line.” he explains.
“We don’t save for a rainy day - because we’ve already had that rainy day.”
Retired deputy headteacher Tony, who joined St Catherine’s as a trustee last October and also gives his time each week as a volunteer driver bringing patients in for day therapy, says he is delighted to be part of the work of the hospice.
He says: “Hospices are wonderful places.
“They have an ethos and an atmosphere which is unlike anywhere else. At St Catherine’s people have the time and the expertise to talk about these sensitive issues.
“The focus isn’t on how many days someone might have but on what they can do with this time - a focus we wish we’d had more of with Neil.
“And there is such attention to detail. St Catherine’s gets the little things right and it is all these smaller things which can make such a big difference.
“St Catherine’s is a vital part of the Preston, Chorley and South Ribble community and we are committed to sharing and spreading the skills, expertise and experience which are embedded here further across the area so that more people can benefit.”