If nurses won’t raise the subject of death with a patient, who will?
Why it’s important to have an honest conversation about an individual’s end of life care
Why it’s important to have an honest conversation about an individual’s end of life care
- Healthcare professionals are often reluctant to broach the subject of dying with patients
- ‘Perpetual cycle of non-discussion’ compromises the support offered to the individual and their loved ones
- The pressure to achieve a peaceful death at home can make families and clinicians feel they have failed
Molly Bartlett thought long and hard before she made the decision not to pursue aggressive treatment for cancerous tumours on her kidney and adrenal gland.
Having been diagnosed with renal carcinoma 15 years earlier, and having undergone a successful nephrectomy at that point, she was not convinced that the (non-curative) treatment she was being offered this time was the right thing for her.
‘I felt the steer from the first surgeon I saw was towards having treatment, but there wasn’t really much room for discussion. Conversations are so important, but I didn’t really feel he considered my thoughts and position. I sought a second opinion and I felt a little bit more empowered. The second consultant was more open, and said things like “I’d be 50-50 on this”.
My decision was based on evidence and information
‘I looked at all the evidence and, being the sort of person I am, I Googled “how to make a medical decision”. I drew up the most complicated matrix but realised you could really argue it either way.
‘In the end, I took control and decided I didn’t want to pursue treatment. I’d had a good life subsequent to my original cancer diagnosis, I was 65, and I had a very supportive partner who was completely alongside me.’
It’s now more than five years since Ms Bartlett’s scans showed the tumours had developed and, as she puts it, the ‘real journey’ began. She has had, she says, ‘the most fantastic support’ from her local hospice, St Wilfred’s in Eastbourne, which she attends as a day patient, and whose helpline she can call if she or her partner has any worries.
She has become an advocate for encouraging people to think carefully about what they want at the end of life, and to be prepared to have conversations with loved ones and health professionals. And she urges health professionals to open these conversations with patients at as early a stage as possible and cautions against taking an approach that involves extending life at all costs.
Clinicians shy away from the subject
These are messages that resonate with the charity Compassion in Dying. It published a report late last year called I Wish I Had Known based on its experience of supporting around 25,000 people to plan for the end of life.
One of the key findings is that healthcare professionals are too often reluctant to instigate conversations about end of life, which can lead to a ‘perpetual cycle of non-discussion’. ‘Through our own work we have learned that this has denied dying people the opportunity to talk about their wishes and make decisions and plans for the future,’ the report states.
‘Everyone thinks that someone else is having the conversation, which means that nobody is’
Sarah Malik, specialist information and support nurse, Compassion in Dying
The report points out that just 14% of people would feel uncomfortable with having a conversation about their end of life wishes with a healthcare professional, yet only 52% of people would initiate that discussion. This, says Sarah Malik, specialist information and support nurse with Compassion in Dying, underlines the need for nurses and other healthcare professionals to be prepared to make the first move. ‘The report dispels the myth that people don’t want to talk about this,’ she says.
‘For nurses, it’s about having those conversations, not fearing that they’re getting it wrong. Too often people fear they will say the wrong thing so they don’t say anything.’
Ms Malik, who has many years' experience of nursing in haematology, oncology and hospice care, recognises the pressure on nurses. ‘I know what a hard job it is to make the time to have conversations with people – when there are 28 patients and three nurses, it’s a huge issue. But one of the problems is that everyone thinks that someone else is having the conversation, which means that nobody is. That’s a massive part of it.’
What people want
What people told Compassion in Dying that they wanted:
- Conversations about the end of life
- Honest information so they can make informed decisions
- Recognition that priorities can differ
- Support to plan before they reach the end of life
Source: I Wish I Had Known report, 2018
Let’s be honest
Honesty is also vital, she says – and that includes going against some of the prevailing narrative about what death looks like. In a recent blog, Ms Malik rails against the idea that all deaths are peaceful as well as the use of ‘dying at home’ as a proxy measure for good care.
‘Yes, death can be peaceful, but for some people with liver cirrhosis, for example, which is not that unusual a condition, death is not quite as peaceful; there can be some horrible symptoms,’ she says. ‘I value what palliative care can do, but I think we have to be honest about the fact that not everyone falls into a deep, pain-free sleep before they stop breathing.’
Every death is different, she adds, and no one should feel they are ‘failing’ if they or their loved one (or even their patient) does not ‘achieve’ a peaceful death at home.
‘You can’t underestimate the power dynamic between patients and surgeons. Nurses have an important role there to be the patient’s advocate’
Clinical nurse specialist Paul Everett of the BUPA Cromwell Hospital in London, says people should be encouraged to think about their preferred place of death – with the understanding that this won’t necessarily be at home. ‘Dying at home has been mis-sold,’ he says. ‘We hear the rhetoric about choice – and I’m all for patient choice – but the reality is that it’s only a choice if you can get the right care. If you choose to die at home and the community support isn’t there, then you are left high and dry.’
There can also be practical issues, he says. Someone might be very keen to care for their partner at home, but what if they are also trying to look after young children, or are frail themselves? And what about people who don’t have or want family or friends to do this, even if the support were available?
‘It’s very tough on the family,’ says Mr Everett. ‘I know of patients who know they are coming to the end and want to be at home, but they want to come back here when it is time [to die]. It’s about having those honest conversations and doing the advanced planning.’
How we ensured my husband had a comfortable death
When Penny Jaques looks back at the death of her beloved husband David, she feels a great sense of relief about how it happened. David, who had Alzheimer’s disease, had been in a care home for nine months and was settled there. But then something happened that could have changed everything.
‘He had been asleep for several days, and they thought he had a bladder infection. The GP felt he should be admitted to hospital but he was very calm and well looked after where he was. I felt it would upset him to go to hospital.
I could see the GP’s relief… there was a living will
‘Fortunately, he had done a living will some years previously. When the GP saw it, I could see the relief on his face, because he knew what my husband would have wanted, and knew that he wouldn’t have wanted to go to hospital in those circumstances.’
As a retired social worker, Ms Jaques likes to have her paperwork in order and had handed the living will to care home staff along with other documentation when her husband had gone to live there. In the event, she was glad she had.
‘Some people don’t like to talk about their wishes for future care, but they should’
‘He would have been in a terrible state in hospital,’ she says. ‘His death was completely right. The family had been to see him to say goodbye, he was very comfortable, and the staff were so caring. When they phoned me at 1am to say he had died, one of the carers was actually crying. They were very humane, always.’
Ms Jaques, who lives in Oxford, has made sure her own wishes about future care are noted and would encourage others to do the same. ‘Some people don’t like to talk about it, but they should,’ she says. ‘If someone doesn’t want to be resuscitated or have invasive medical care, they should be given the opportunity to slip away peacefully.’
Compassion in Dying resources
From the patient’s perspective, Ms Bartlett cautions that discussions can take place over a long period, and that nurses should not be afraid to revisit the topic. ‘I think timing is important – I’ve had the luxury of time but not everybody has that. I think if you have time, then you can plant seeds, taking the opportunity to mention the idea, encourage people to think about what they want, and what they might want in the future.’
She believes that people are actually more realistic than some health professionals might fear, and that they are open to conversations that some might consider challenging or difficult.
Putting pressure on patients – without meaning to
Ms Bartlett also urges health professionals not to pressure patients – and to consider whether they are doing so unconsciously. ‘You can’t underestimate the power dynamic between patients and surgeons, for example,’ she stresses. ‘Nurses have an important role there to be the patient’s advocate.’
She is ‘surprised’ that more than five years after diagnosis she has been able to spend so much time campaigning on this issue – including making an informative training video for care home staff, a crucial audience when considering people near the end of life.
‘When I first walked into the hospice, I probably didn’t think I’d got a year,’ she says. ‘I’m completely surprised to be here and to be able to continue this discussion. I feel very blessed.’
Jennifer Trueland is a health journalist