End of life care is still a taboo subject for many, but it needs to be discussed openly if a dying person’s wishes are to be carried out. Dan Parton reports.

Norris’ story

Norris James had fought a long, brave battle against cancer – outliving his doctor’s original prognosis by 10 months - but when he knew that the disease was finally going to beat him he made sure he was cared for in the place he wanted to be.

In the week before his death, 80-year-old Norris told his brother Willmot that he wanted to die in Wheatfields Hospice in Leeds, which is run by Sue Ryder Care.

Wanting to carry out his brother’s wishes – it was clear Norris was dying – Willmot asked Norris’ district nurse to contact the hospice and find an available bed for him. When a bed was available, Norris was taken to the hospice in a Palliative Care Ambulance, which arrived within 30 minutes of being contacted.

Once in the hospice, Norris’ condition quickly deteriorated. “He was conscious for about half an hour and answered a couple of questions from the doctor, but then he became unconscious and never recovered consciousness,” Willmot says.

“He seemed to think ‘this is where I want to be’ and gave up the battle he had carried on for 16 months.”

Norris died peacefully the next day.

Willmot says Norris received excellent care at the hospice in the short time he was there, and from Marie Curie Cancer Care, which had provided community palliative care in the weeks leading up to his death. He believes that going into the hospice made a positive difference to Norris in his final hours.

Making a difference

For Susan Munroe, director of nursing and patient services at Marie Curie Cancer Care, for people to receive the end of life care they want in the place they want, can be crucial. “For people who are dying, to be able to die in the place they are comfortable and know well - particularly for people with children - makes a huge difference.

“I have had people tell me about their experiences trying to bring children up to a hospital or hospice. With small children, you are conscious that they are noisy and the patient has to stay awake when the children come, whether that’s the time they feel like being awake or not.”

But if the patient can remain at home, these concerns are eliminated and it can help to maintain as normal a life as possible. “The patient and children can sit and watch television together and do normal family things. It keeps the children in touch with the parent or grandparent that’s dying,” Susan says.

“It is about your own noises, smells, feeling of things; it makes a huge difference to people.”

Get what you want

But for this to happen, people reaching the end of their lives have to make their wishes known. Yet most do not discuss it with their families or the people treating them because it is still a taboo subject. Likewise, professionals treating someone at the end of their life may also feel uncomfortable discussing the options available to the person and their family, according to Susan.

“We need to take away the taboo and the fears of it and make it something that is as normal to discuss as what you’re having for dinner tonight so people are much more comfortable about having the necessary discussions."

“We [Marie Curie] often hear that the patient might be ready to have the discussion but the family aren’t – the family don’t allow their loved one to tell them what they want - so when it does happen they are completely unprepared because they didn’t know what the person wanted.”

There are already measures in place to try and break down these barriers and give people the chance to make their wishes for end of life care explicit and document them, such as the Gold Standards Framework.

The Framework gives professionals the opportunity to talk to patients about what they want at the end of their lives.