Pat Duckett deals with death every day. she works for an NHS trust in which 1,600 people die every year, and she has seen many things. One of her more extreme encounters was when one man asked her to hold a stethoscope over the chest of his dead father while he chanted prayers. “He thought he would wake up and they could take him home in the car. the son said: ‘We’ve got the engine running outside. Wake up, Daddy. It’s time to go.’ I had to say: ‘I’m afraid his heart isn’t going to start beating, because he died last week.”
As anyone who has ever been suddenly bereaved knows, the death of a loved one can have an explosive effect – following the immediate trauma of loss comes a prolonged period of shock, and questions: “When did this illness start?”, “How could someone die so suddenly?”, or just “Why?”
Pat is a bereavement co-ordinator for the North West London hospitals NHS trust, a major acute trust. in the majority of cases, relatives find a way of coming to terms with their loss. but for a significant minority, making sense of what has happened is extremely difficult. “Most people will grieve and be perfectly OK, with support from family,” she says. “They get over it. Grief is, after all, a natural process. but sometimes when someone dies, it is literally incomprehensible to their loved ones.”
Her role is to help the bereaved edge closer to some form of closure. she is not a counsellor, but rather a liaison officer between a hospital and families in mourning. more often than not, her work involves guiding them through medical notes, enabling them to have a better medical understanding of the events that led to the death.
“If a patient is in intensive care, then typically the family is bombarded with a lot of medical information at the time,” she explains. “But then, when the person dies, that’s it.”
I am speaking to Pat in one of her consulting rooms at Northwick Park hospital (whose trust has one of the lowest mortality rates in the country). the room is designed to exude serenity – sunshine cascades through the venetian blinds; a pot of brightly coloured synthetic flowers sits in one corner, and there is a box of tissues on a coffee table. in this room she arranges 40 meetings a month with bereaved relatives, taking them through folder after folder of medical notes, jargon-heavy texts that provide a medical synopsis of the final chapter in someone’s life.
“I’ll explain to them, ‘So at this point, there was an X-ray, which indicated this. then, here we can see that they took a blood test.’” a frequent reaction to revisiting the past in this way is that family members will suddenly realise just how ill their relative was, she says. “In hospital, when you are losing a loved one, it’s very intense. You don’t always listen to what medical people are telling you.”
While guiding relatives through medical notes is a central part of what she does, her role as bereavement co-ordinator involves other strands: she advises families of other services, including counselling, and helps organise funerals when, for instance, families are too overwhelmed to cope, or when elderly patients die in hospital with no apparent family.
Not all bereaved families wish to take up Pat’s services: the majority navigate their own way through grief. but in some cases, that is too hard a path to travel alone. a lot of Pat’s time is spent talking to couples whose children have died unexpectedly, or to families who have suffered a traumatic death, or to those who find it too difficult to accept that someone has died.
“Through this job, I’ve learned the true meaning of being ‘grief-stricken’,” she says. “I’ve encountered a couple who have broken up after losing their child. Grief tore them apart. I’ve dealt with a wife who insisted on seeing her husband in the mortuary for several consecutive days. she arrived each day to dress him ritualistically. she even shaved him.”
Everyone responds differently to death. One of Pat’s mantras is “nothing is wrong in grief”. she almost always honours requests from bereaved relatives, however unusual. a common wish is to touch the body of a loved one: hold their hands, or kiss their foreheads or even wash their face. One woman asked Pat if she could help her retrace the journey her 15-year-old daughter’s body made from the hospital to the mortuary, after she died from a very protracted illness. she then wanted to see where she had been blessed in the mortuary. “And there’s nothing wrong with that,” she says.
While a lot of NHS trusts can provide some form of bereavement advice, the services on offer can vary greatly and there is no standard model, she says. Her role as bereavement co-ordinator was conceived two years ago, the idea behind it partly stemming from the fact that a significant number of complaints to any hospital trust are to do with deaths: according to Pat, 60% of deaths take place in hospital, and 60% of complaints to the Care Quality Commission, the organisation that monitors hospital care, are about bereavement.
The thought was that if bereaved people could be empowered with facts about someone’s death, they might be less inclined to make a formal complaint, and be able to find closure more quickly. Neonatal deaths are often a focus of her work: she will sit down with parents and discuss the, often not wholly knowable reasons why a baby has died before even leaving hospital.
“If people get stuck into protracted correspondence with a hospital, it doesn’t help with their grief,” she says. “What helps is having knowledge about the events that led to that death, so they get a better understanding and proper support, bringing them out of the loop so their grief can progress.” (In the past two years, the trust has seen a drop in bereavement complaints of 48%.)
Pat’s theory is that grief itself has evolved in the last century. “We have lost this pattern of sharing the death in the family. in Victorian times, when someone died, the neighbours would all come in and see the dead person in the parlour. And the family would pay their respects up close with the body.”
She experienced her first sense of true bereavement when her grandmother died. but this was infused with a sense of happiness: “She died at home, after falling asleep with her hairnet on, her brandy glass empty, a smile on her face. it was a kind death.”
If death had dealt a kind hand to her grandmother, it was much crueller to Pat’s father seven years ago. a serious bowel condition meant his gut used to “twist”, resulting in emergency procedures. Finally, he came to Northwick Park hospital (where Pat is now based) to have most of his colon removed. He lost six stone, and was a shadow of his former self. When he succumbed to organ failure it was a release for everyone, she says.
Pat was keen that her own daughter, then aged six, was involved in his death. she encouraged her to “do her homework on her grandpa’s deathbed” then attend his funeral. “I wanted her to see that death is a process that is part of life,” she says.
How has her job changed her view of death? How does she feel about her own death now? “I’m not afraid of it. In fact, I revere death. that might sound odd, but I see it as something phenomenal. the effects of it on families are so powerful, how it casts such a long shadow over so many people. Being involved in that, I feel quite honoured.”
When she started her job, Pat admits she brimmed with enthusiasm, but the work took its toll. she initially saw up to three families a day, but got exhausted – physically not emotionally. she developed intense headaches and decided on a strategy of limiting her meetings to just one or two a day.
The overriding feeling that she has about her job, however, is that she is privileged. every day she finds herself embroiled in the most emotionally profound experiences of people’s lives and for that, she says, she feels deeply honoured.
“I always acknowledge the intimacy of strangers. the people I meet tell me the most intimate things and I’ve never met them before in their life.”
My husband James was 59 when he was admitted to hospital on 10 December last year. He had been feeling lethargic but was not in pain. He was working on the Thursday when he told me when he went to the toilet that he found he had passed black motions.
Doctors said internal bleeding and an enlarged liver could be symptoms of alcohol-related liver disease. I knew that could not be the case with James: he drank four or five times a week, but was certainly not an alcoholic.
He was given blood transfusions and heavily sedated. He really didn’t know what was going on. As the days proceeded, he seemed increasingly agitated, but the doctors put this down to withdrawal from cigarettes and alcohol. Ten days after he was admitted, we received the phone call: he had had a cardiac arrest. By the time we arrived, he had died.
The shock for me, and my son and daughter, was immense. He had died so suddenly. we all wanted to get to the bottom of what had happened. that was when we met Pat. we went through the coroner’s report and began to get some answers.
Pat explained that while James had symptoms exactly like those of liver disease, the breakdown of his liver had been secondary to the main cause of his illness: lung cancer. He’d had the worst form, “small cell” lung cancer, which had spread rapidly from the lungs to his liver and renal glands.
Pat explained the detail calmly and with sympathy. we had so many questions but the doctors were often too busy to answer. I had three more sessions with Pat, which were more informal, less medical. Meeting her helped enormously. I had been angry about the misdiagnosis of alcohol-related disease, but came to understand why it was made, and was more accepting of James’s death.