Death survey ‘is insensitive’ - Bereaved relatives to be quizzed on care
AN NHS survey that will be sent to bereaved relatives of patients who died of terminal illnesses has been criticised as “insensitive” by a leading charity.
Next week 800 recently bereaved residents across Westminster – including wives, husbands and children coming to terms with the loss of a loved one – will open a letter asking them to fill out a questionnaire to help improve the quality of care for patients in the last days of their lives.
But Cruse Bereavement Care, a national charity that supports grieving families, say the ethics of conducting such a survey when people may be fragile and under considerable emotional strain were “questionable”, warning it could trigger negative reactions.
Anjula Sharma-Smith, helpline manager at Cruse, believes the survey will be of negligible value, given that recipients will already be confronted with an overwhelming amount of paperwork that follows a death and are unlikely to respond.
But health bosses at Westminster Primary Care Trust have defended the QUALYCARE survey. They say “difficult questions” must be asked if they are to learn how to improve services on offer to patients during the last days of their lives. They stressed that there would be a four-month minimum gap between the time of death and contact to avoid the period of most “intense stress”.
Researchers from King’s College London, the university leading the study, have pulled names from the death register to contact 1,400 people in Westminster and three other London Primary Care Trusts: Bromley, Islington and Merton and Sutton.
Ms Sharma-Smith said: “It’s hard to predict how people will react. I’m sure many will be angry but it will just depend on the person. Some will think, ‘why are they sending me a questionnaire when my husband has just died of cancer?’ They will see it as an insult.
“For others it will be just adding to their burden.”
But she added that for some people filling out the survey could be an opportunity to begin the grieving process.
The scheme was piloted last year and has been approved by the NHS ethics watchdog, the Research Ethics Committee.
Professor Irene Higginson, head of the Department of Palliative Care at King’s College London, said: “Unless we ask families and friends about their views on the care received, we cannot increase our understanding of the services and improve care for others in the future. We very much hope people will feel able to contribute.”
Dr Tessa Lindfield, acting director of Public Health at NHS Westminster, said: “We know very little of how our services are operating on the ground from the point of view of the patients and their families. This study will make a huge difference.”
JAMIE WELHAM